October 8, 2024 • 52 mins
In this episode recorded for baby Loss Awareness week 2024, Join us as Catherine MacLennan from the Vilomah Foundation opens up about her personal journey through pregnancy loss and the varied care she received.
Catherine’s story underscores the emotional toll and disparities in care, urging for a more empathetic approach in maternity services. We discuss the 2016 project, Nobody's Patient, and its enduring impact on bereavement care. From workshops in South West London to the importance of active bereavement teams in every hospital, Catherine emphasizes the significance of individualised care.
As Baby Loss Awareness Week and the Wave of Light event on October 15th approach, we reflect on the evolution of the Vilomah Foundation & its work. Providing virtual sessions for greater accessibility , Catherine introduces their new workplace training initiative, designed to spread awareness and support across various settings. This episode is a testament to resilience and the transformative power of community and understanding in the face of profound loss. As Catherine says ' Be the difference'.
https://thevilomahfoundation.org.uk/
https://babyloss-awareness.org/
Find Catherine X @thevilomah, FB & Insta The Vilomah foundation, or email hello@thevilomahfoundation.org.uk
Thank you all for listening, My name is Florence Wilcock I am an NHS doctor working as an obstetrician, specialising in the care of both mother and baby during pregnancy and birth. If you have enjoyed my podcast please do continue to subscribe, rate, review and recommend my podcast on your podcast provider.
If you have found my ideas helpful whilst expecting your baby or working in maternity care please spread the word & help theobspod reach other parents or staff who may be interested in exploring all things pregnancy and birth.
Keeping my podcast running without ads or sponsorship is important to me. I want to keep it free and accessible to all but it costs me a small amount each month to maintain and keep the episodes live, if you wish to contribute anything to support theobspod please head over to my buy me a coffee page https://bmc.link/theobspodV any donation very gratefully received however small.
Its easy to explore my back catalogue of episodes here https://padlet.com/WhoseShoes/TheObsPod I have a wide range of topics that may help you make decisions for yourself and your baby during pregnancy as well as some more reflective episodes on life as a doctor.
If you want to get in touch to suggest topics, I love to hear your thoughts and ideas. You can find out more about me on Twitter @FWmaternity & @TheObsPod as well as Instagram @TheObsPod and e...
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Florence (00:00):
Hello, my name's Florence.
Welcome to the OBS pod.
I'm an NHS obstetrician hopingto share some thoughts and
experiences about my workinglife.
Perhaps you enjoy Call theMidwife.
Maybe birth fascinates you, oryou're simply curious about what
exactly an obstetrician is.
You might be pregnant andpreparing for birth.
(00:21):
Perhaps you work in maternityand want to know what makes your
obstetric colleagues tick.
Or you work in maternity andwant to know what makes your
obstetric colleagues tick, oryou want some fresh ideas and
inspiration.
Whichever of these is the caseand, for that matter, anyone
else that's interested, the OBSpod is for you.
Episode 177 be the difference achat with katherine.
(00:57):
Today we are welcoming to thepodcast katherine mckennan the V
the Foundation, and I've knownCatherine for some years and
she's absolutely helped pioneersome work, particularly with the
(01:18):
gap between gynecology andmaternity services and
mid-trimester, so middle ofpregnancy loss, and I'm very
excited to have her here today.
Catherine, do you want to maybesay a little bit about who you
are?
Catherine (01:37):
Yeah, well, Catherine and I'm founder of the V
Foundation, which is a charitythat supports people who've gone
through pregnancy loss, butalso people who are pregnant
after loss, and we offer freeone-to-one and group support to
(01:59):
those people as and when theyneed it people um, as and when
they need it.
Florence (02:10):
Fantastic, and I've seen you're busy on instagram
and there are lots of eventbritelinks people can can book into.
Catherine (02:13):
Yeah, to get that support just on the website,
which iswwwthevilomahfoundationorguk.
Um.
Anyone who wants to access theservice, the links on that page
perfect, and i can put that linkinto the, the show notes.
Florence (02:32):
So I'm going to go back in time a little bit,
because we first met via jilljill phillips, aka, whose shoes,
and she met you on a train.
Catherine (02:48):
Yes, tell us a little bit about that train journey,
sort of like seen Gill seen andcommunicated with her in the
twitterverse and we were at atwitter event in manchester I
think it was, and at the end ofthe day we were both going to
get the train and we wereactually getting the same train.
(03:09):
So we sat together and I foundout a little bit more about what
she was doing with the whoshoes, maternity and I shared my
story with her.
I think she's probably the onlyperson that sat and listened
through my whole story, so it'ssort of like, yeah, I bent her
(03:32):
ear a bit for the whole journeyback, but it was sharing my
story.
So I've experienced sixpregnancy losses.
Three of those are in thesecond trimester and I'd had
very different experiences ofcare.
So sometimes it was very, verygood and sometimes it was very,
(03:57):
very bad.
And that's what I was sharingwith Gill was those experiences
and particularly around how Iwas treated when I went through
my second trimester loss throughgynae and how I was treated
when I went through my secondtrimester loss with the
bereavement suite.
So the experiences were so, sodifferent.
(04:20):
And when we , Gill talking, washer brain.
You could see her brain wasturning over and you know she
was up to something.
And at the end of the journeyshe just said to me I don't know
if there's anything I can do,but if I do think of anything
that I can help, you know withyou, I'll get in touch.
(04:43):
And I thought, well, shared mystory, you know it's'll get in
touch.
And I thought, well, shared mystories, you know it's there,
it's done, and didn't reallythink much more of it.
And then I got a phone call tosay, flo, and I've been talking
and at this point I knew youthrough Twitter as well, but I
hadn't actually met you at thispoint and I've had this idea and
(05:10):
she said we're going to do awho's Shoes special which will
look at.
One of the threads that theylook at is people who've
experienced second trimesterloss, people who've experienced
second trimester loss.
And that just began a hugejourney into what turned out to
(05:31):
be an amazing resource, but wasan amazing experience as well.
So we met up and I got togethera small group of people who I
knew through the support workthat I was doing, who'd
experienced a second trimesterloss as well, and she came along
(05:52):
with Anna, the amazingillustrator, and we just
explored what the loss meant tous and it was in a really
amazing space called ShaktiWomen um, unfortunately it
(06:12):
doesn't exist anymore, but theroom itself was very empowering
because it had lots of reallygreat signs like just images of
affirmations and things likethat.
So there was a very positivevibe in the room, that it was a
safe environment.
And so there were six of us andwe just explored what our
(06:38):
losses had meant to us, whatwe've been through, the things
that had caused us distress.
Everyone in the room hadpost-traumatic stress disorder
from their losses and none of usreally had had any support
(06:59):
following our losses.
We'd been left abandoned tojust get on with life and
navigate that ourselves.
And it was.
There was laughter, there wastears, but it was a really
empowering space to be in.
And Anna captured all of thatin an amazing graphic.
(07:28):
And we looked at things likelanguage.
Particularly Language was ahuge thing and I know that
that's been quite big in thematernity workshops that have
been done around whose shoes inother areas as well.
But phrases like incompetentcervix, spontaneous abortion,
(07:48):
things like that had been usedin our experiences of of our
losses and it felt quite sort oflike brushed aside, that it
wasn't really anything to worryabout and you know it's just one
of these things that happens,whereas for you it's a
devastating experience and therewasn't the support in place
(08:13):
there to do that.
And we all had differentexperiences from being in
gynecology or being eachhospital was different, so some
people were seen undergynecology, or being each
hospital was different, so somepeople were seen under
gynecology, some people wereseen under maternity services
delivery suite, so it dependedon how many weeks you were as to
(08:35):
where you got seen, and thatwas quite distressing for for
everybody, because some peoplehad actually been on a ward, on
a maternity ward.
I myself was on a bay with otherwomen who had had
hysterectomies and um polypsremoved and you know, sort of
(08:57):
like it was just the worst placeto be and you know, sort of
like everybody did their roundsand you were just left to your
own devices, really, um, so yes,we from that jill did her magic
, which amazes me how she doesit, because the cards that she
(09:19):
developed for the who shoesproject were just so spot on.
I remember the first workshopthat I helped facilitate and
reading the card and thinkinggosh that is straight from my
mouth and you know, sort of likethinking gosh, she really did,
you know, sort of like capturedthe moment, because that's
(09:40):
exactly what I said.
And so the Nobody's's patient,we launched it and it was just
brilliant to be in the room thatfirst session that we did,
which was was it St George's, uh?
We did Kingston and St George's, yeah.
And just to be in a room fullof professionals and bereaved
(10:07):
parents and to see theconversations just coming out
and people really reallythinking through their own
practice of what they do wasreally really special you're
right.
Florence (10:22):
What happened sort of from my side was this maternity
MATEXP challenge fund came out Ithink it was about a week after
you'd Gill and and we werethinking, oh, how do we put in a
bid for this?
What would we like to do tokind of develop some further
(10:43):
resources on top of the the workwe'd already done in maternity?
And it was your story and LeeKendall's story.
Yeah, that that justimmediately we both thought
these are women that are fallingthrough gaps in care, women
that are between gynecology andmaternity, and women that are
falling through gaps in care,women that are between
(11:04):
gynecology and maternity, andwomen that are between neonatal
and maternity and women that arebetween critical care and
maternity.
And the Nobody's Patient titlecame from a tweet.
Someone wrote that I saw aboutfeeling like she was nobody's
patient and your story was sopowerful.
(11:26):
I mean, I've I I definitelyhave learned a lot from you.
And even now there's thatarbitrary before 18 weeks is
gynecology and after 18 weeks ismaternity, and it's just a line
in the sand, isn't it?
And I definitely think thingshave changed as a result of our
(11:51):
project.
But also, people are stillusing the cards.
So, like you say that stuffthat came from your mouth that
Gill and Anna and we capturedwith you.
People are still using it inworkshops.
For example, Gill and I justdid a series of workshops in
(12:15):
South West London and Croydondecided to focus on the Nobody's
Patient resources for theirworkshop, so that's a whole
another team suddenly exploringthat topic and those issues.
(12:35):
The the project was 2016, butthe ripples are still going
absolutely and that's great.
Catherine (12:45):
That's what's you know, sort of like the fact that
people are still using the gameto explore the issues.
And you know, and they arestill there.
Although things have, you know,as you said, they've changed
immensely since since then, itstill reminds people that these
things are not in our distantpast.
(13:06):
You know they, they were thingsthat happened a few years ago.
Yeah, we need to make sure thatthey don't slowly breed back
into the environment thatthey're working in.
Florence (13:19):
Yes, yeah, I wanted.
I was kind of reflecting a bitfor today and I was thinking
from my perspective.
I feel like there've been quitea few changes in the years
since we started workingtogether and I was interested to
(13:39):
know whether you feel that aswell, because you know that's
the power of co-production,isn't?
It is a doctor can say, well,we've made this, that and the
other improvement, but actuallydo you feel that there have been
positive changes?
Catherine (13:57):
I think with the national care movement pathway
that it's really highlighted theneed for care across gynae and
maternity and I think, with youknow sort of like I think every
(14:18):
hospital in England's now signedup to it.
So that gives very clearguidance on how people should be
interacting with people who'veexperienced loss and I think
it's working.
From what sort of like what Ihear it's working.
But I think that's where thoseare the places that have
(14:40):
actually the hospitals that haveinvested in their bereavement
teams.
So where bereavement teams arevery active, then it seems to
have made a huge impact.
Yes, not every hospital has afull-time bereavement team.
Florence (14:56):
Yes, so until everywhere has a full-time
bereavement team, then there'llstill be gaps in the service yes
, and it's interesting because Iwas thinking, the very last
workshop I helped lead beforethe pandemic was march 2020 and
(15:18):
we were like, should weshouldn't?
We was colchester, and that wasjointly with SANS, the
stillbirth and neonatal um deathassociation, and, uh, in
Colchester looking at thenational bereavement care
pathway using the nobody'spatient resources.
(15:40):
So it's, it's absolutely.
You're right, there's still toomuch variation, isn't there?
Catherine (15:47):
yeah, and I think, sort of you know, there's still
that thing between the cut-offstages of what's gynae and
what's maternity.
Every hospital does need tohave a bereavement suite that
just deals with loss.
Yes, um, that isn't about whatdepartment.
Yes, it falls under.
(16:09):
Yeah, or there has to be aparity between how people who go
through earlier losses andpeople who go through later
losses are treated.
Yes, and not.
Everybody wants to be, not ever.
I mean, the other side of it isnot everybody wants to be on a
bereavement suite.
(16:30):
Yes, some people just want toget into hospital, get out, be
over a runway.
So I think there has to berespect for those people that
choose not to.
Yes, go through that, it doeshave to be a choice.
Um, I know, I found it verydifficult on the bereavement
suite because there was a bookof people who'd been there
(16:51):
previously and written messagesin it and it was just like to me
.
That was just.
It overwhelmed me that you know, there was this book of all
these babies who died.
Yes, but then the sort of likebeing away from the ward and the
delivery suite meant that Iwasn't interrupted.
(17:14):
Yes, it's babies.
Florence (17:18):
Yes, yeah, I mean, it's back to the same for
everything, isn't it?
It's about individualized,personalized care, yeah, of
what's right for you in thatmoment and you staff being able
to offer you choices and read.
(17:41):
You know what works for you,what doesn't work for you yeah
because I agree, I've, I've hadcertainly looked after people
who are I don't want to see mybaby, I don't want to do
anything, I don't want anymemories.
And then others who may havehad a much earlier pregnancy
(18:03):
loss, but who feel they do needsomething tangible.
They do need something tangibleand I think we can be still
quite dismissive, particularlyof of early loss or earlier
Maybe I should say earlier, likefirst trimester, that's still
potentially two or three monthsof there's that visualization,
(18:28):
isn't there three months ofthere's that visualization,
isn't there?
Imagination of that baby?
Catherine (18:37):
that you imagined you were going to have, and I think
that that's the thing is mostpeople are.
They're trying to have a baby,so they've gone through an
emotional process of saying,right, we're ready, this is what
we want.
And then, when you get thepregnancy test, straight away
you're you've got dates in yourhead and so you've got the dates
(19:00):
for your scans, you've got thedates for your due date, and
then you know you're thinkingahead to right, what skills am I
going to need to think about?
And you know all of thosethings come into play within
those first few weeks of apregnancy.
So it's not just that they'velost a two-week pregnancy,
(19:22):
they've lost all of those hopesand dreams that they had with it
.
And I think that's where theimpact of a pregnancy loss isn't
recognized.
Um, for, as for why it does,you know, impact people who do
have those earlier losses.
And you know, sort of like,where people have had a scan,
(19:46):
maybe at six weeks, becausethey've had a bleed and they've
seen a heartbeat.
You know they've seen aheartbeat.
So when they lose their baby ateight weeks, it it wasn't
expected because they'd seen aheartbeat.
Yes, and you know, sort of like,we get told not to tell anybody
before 12 weeks and I reallydon't agree with that.
(20:09):
It's a very personal thing andI think people have the choice
to tell or not tell.
But I think by telling peopleyou have that support in place
if things do go wrong.
Yes, yeah, um, I'm not sayingtell the world and, you know, do
a Facebook, you know, sort ofannouncement, but to tell people
(20:31):
who are close to you so that ifthings do go wrong you've got
some support in place yes, yeah,that's very true, and I
definitely see that, even laterthan 12 weeks, women saying but,
but I hadn't told work yet.
Florence (20:53):
Yeah, and then there's that thing of how do I explain
not only am I suddenly off sick,but the emotion you you might
be going through when you'vebeen pregnant for four or five
months but nobody knew.
And then I know you've beendoing some work with
(21:18):
organizations in terms of well,how do you care for that person
that's working for you ifthey're in that situation?
And I think there's a lot there.
I remember vividly the thingfrom you about the social media
(21:39):
posts.
Back to school time, september,here's my little gorgeous child
going back to school orstarting reception.
And I really remember youputting out a post which was
your six children that obviouslywere not going to school, and
(22:04):
you I can't remember if theywere silhouettes, but do you
remember what I mean?
You had a picture of sixchildren not babies, children
that you'd lost and that weren'table to have that back to
school celebration, et cetera,and I found that immensely
(22:26):
powerful.
There was something about thatthat in my brain some something
flipped in terms of how Iunderstood what you'd been
through.
I think, yeah, and I think foreveryone it's different, isn't
it?
But I'm quite a visual person,so maybe that's why that post
(22:48):
and that picture kind of made mesuddenly think wow, oh yes yeah
, I think that's, you know, sortof like, especially when you're
pregnant and somebody else ispregnant.
Catherine (23:04):
So I've always been pregnant when somebody else is
pregnant.
That's close to me.
So you see them going tonursery, you see them going to
school and last year I washaving a wobble and I was trying
to work out why.
And it was like I was messagingmy niece to say how's it going
(23:25):
with your studying for yourGCSEs?
And then it hit me that Ishould have been sitting with my
child helping them throughtheir GCSEs.
Yes, because they would haveonly been two months difference
in their age, right.
So it was like, even though itwas 16 years ago, yes, it still
(23:47):
hit me because it's like Ihaven't experienced that.
You know, pregnancy loss tookaway that journey in life.
Yes, it just took that awayfrom me.
And it's things like that of youknow, sort of like friends who
are going into high schooltalking about their options for
(24:11):
what they want to do, and it'sjust sometimes it's just that
little stab in the heart.
Yeah, you know, sort of like.
It's not a con like I don'tthink sit in my diary and think,
right, today would have beenyou know, so like, because I
think sometimes people get thatimpression that's what you do,
but it isn't.
Yeah.
It is that sort of like you'rejust doing something and then
(24:34):
obviously it'll be yeah.
Ah, I should have been doingthis with yeah and I'm not.
Yes, and there's a sadnessthere.
Florence (24:44):
Yes, you know, but with the years it doesn't break
you like it did in the earlydays yeah, I'm really struck by
the fact that you said when youhad that specific focus group
that everyone had PTSD fromtheir experiences.
(25:04):
So that's like you're adding ontop of the physical trauma of
losing a child.
You're adding from the care Isay care slightly in inverted
commas from the care andtreatment you've had, where then
(25:28):
it's almost adding insult toinjury by traumatising people
psychologically.
Catherine (25:37):
Yeah, it is very.
You know, some pregnancy lossescan be extremely traumatic and
for a lot of years that wasn'trecognised by my mental health
team.
They were just all just gotcomplex grief, right.
You know, I was reallystruggling with flashbacks, like
(26:01):
I couldn't get out of the housebecause certain noises would
trigger me and it took for me toactually.
I ordered a book off on offlineon PTSD, yeah, and how to
manage it, and I thought thisspeaks to me more than anything
(26:23):
spoken to me, and I went back tomy psychologist and said this
is really helping me.
This is, you know, somethinglike if I go through this list,
this is what I've been through.
And then they started workingwith me around PTSD.
But that was, you know, that wasa good four years before they
did that.
Wow, so you've got.
(26:45):
I'm with me as well, becauseI'd gone through six losses,
although the last two therewasn't any trauma involved.
They were earlier losses, but Ihad four, you know, very
serious traumatic events in mylife.
Yeah, that had happened in ashort period of time.
(27:08):
Yes, and for nobody to pick thatup, yes and for me to have to
actually diagnose myself yeahyou know, was a huge gap in the
service and that's some of thework that, when I was um, when I
did the pinks and blues CIC wassomething that I worked very
(27:28):
hard on was to get mental healthservices to acknowledge that
pregnancy loss can be traumatic.
Yes, and I know that work hascontinued even though I haven't
been involved in it.
Yes, that's that's.
Another positive is that youknow that recognition is is now
(27:50):
there that mental healthservices, yeah, as a primary or
secondary, address the traumathat's attached to a pregnancy
loss yes, and I mean that hasbeen fantastic.
Florence (28:04):
I mean we've now got new services in my area that are
specifically for pregnancy lossor pregnancy trauma, and it's
making a difference.
Undoubtedly it's making adifference.
So I agree that's anotherreally positive change, and one
(28:27):
of the other changes I wasthinking about was the ability
to get a baby loss certificate.
Yeah, I don't know how you feelabout that yeah, I've.
Catherine (28:39):
I was one of the people that was really on the
fence about it because, okay.
So my concern was that it wouldlead to anti-abortion and
people wanting by saying ifyou're recognising it as lie,
(29:01):
then that would impact theAbortion Act.
So that was where my hesitationwas about it, because I believe
that everybody has a choice yes, and that choice should be
there for them whatever stagethey are in their pregnancy.
And so I was very much on thefence about it, because I
wondered if there was anotheragenda to actually putting it
(29:26):
forward or something.
Putting it forward or something.
It's not something I personallywanted when I went through my
losses, because the hospitalgave me a little certificate,
yes, so and I had something fromthe funeral directors as well.
So I had things and at the endof the day, I know what I went
through yes, um, I don't need apiece of paper to tell me that,
(29:50):
but I know it's brought greatcomfort to a lot of people and
when I'm working with people now, I'll say to them have you
applied for, is it something youwould like to do?
Yes, I can explain that.
You know it is there.
If they wish to, some say yes, I, I would really like that.
That'd be really helpful.
Other people say, no, I don'tneed it.
Yeah, so it's.
(30:11):
You know, as long as it stays apersonal choice, yes, then then
I'm happy with that.
I, you know, sort of like, Idon't want to see legislation
that everybody has to, because Ithink even some parents of
stillbirth really don't want tohave to do that whole
registering.
And you know it's reallydistressing.
Um, yes, so I do think it has tostay a personal choice.
Florence (30:34):
Yes, yeah, so we're recording this partly we wanted
to catch up, but also we'regoing to release this for baby
loss awareness week.
Yeah, tell me a little bitabout baby loss awareness week,
(30:56):
what that means to you when Ihad my losses I didn't know
anything about pregnancy lossawareness week.
Catherine (31:06):
It was a lot of years later that I found out that it
was something that happened.
And again, it's something thatI have two thoughts on.
One is that it can be sooverwhelming.
When you see all of the posts,it can be quite triggering on
(31:28):
social media.
So I tend to have a bit of asocial media break for myself.
Obviously I can't have a totalsocial media break because I
have to do social media.
Yes, the loma foundation.
But what I found in the in thepast is I always take a few days
off after Baby Loss AwarenessWeek just to regroup and just to
(31:53):
sort of like reflect on onwhat's happened during the week.
But I think what for me is thewave of light.
I just find that's such aspecial special event and that
happens on the 15th at seveno'clock.
Wherever in the world you are,it's seven o'clock and it's that
(32:15):
constant wave of light goingaround the world remembering all
those babies lost, and that tome is is really beautiful and I
look absolutely love thatevening and I get my candles out
and I do a little sort of likememorial display type thing and
you know, sort of I I connectwith my babies and I think about
(32:38):
them, but I also think aboutall of the other people who are
experiencing that.
You know those people who aregoing through it for the first
time.
You know what it must be likefor them having, you know, to be
part of that club.
You know the club nobody wantsto join and I think it is really
(32:59):
important to have an awarenessweek because people are more
open about it and it helpspeople, those who are in your
network to understand what babyloss is about.
And you know, I think it itchallenges workplaces to really
(33:21):
think about how they supporttheir staff.
I think it challenges thehospitals to recognise it.
I think one of the things that Ifound really difficult was in
my local hospital on Baby LossAwareness Week.
It was in a little room awayfrom the main hospital and I was
(33:43):
like well, you didn't do thatfor Down Syndrome Day, you
didn't do that for PrematurityAwareness.
Why are you doing that?
Why is it not in the foyerwhere people will see it?
Yes, you know, sort of likethat's changed now it is.
You know it is a hospital-wideevent and, yes, it gives an
opportunity as well, forhospitals to put on their own
(34:06):
services, which I think isreally nice.
I think it's, you know, sort oflike to actually meet with the
staff who supported you on yourjourney, in that environment
where you're remembering and youknow that they're remembering
with you.
Yeah, I think is very specialas well.
Yeah, um, and you know thedifferent ways that people are
(34:29):
doing that it's, you know, sortof like.
I struggle with it being in.
Most of them are in churches.
I, you know sort of like,because it's just, it's not
inclusive.
Yes, even though you can put onthe sign all faiths welcome,
you don't necessarily feelcomfortable going into a
(34:50):
particular building of worship.
I do think you know it'd benicer if they were at, you know,
sort of like, other halls oryeah places that do events.
Florence (35:02):
Yeah, I'm not so religious focused yes, I agree,
I agree with you.
The wave of light is reallypowerful and I quite like that
in the same way you've justtalked about for the staff,
because I personally have notexperienced baby loss myself,
(35:27):
but I have experienced a lot ofbaby loss at my work and I'm
able to participate in that waveof light and I can tell you, I
can name a lot of babies yeahand that it's really nice to do
that wave of light and and thinkabout them, because it does
(35:48):
does emotionally touch you as amember of staff.
We're human, but I always findit slightly tricky because it's
a taboo subject and we need totalk about it.
And I have people that come toclinic and go.
Until I experienced it and lostmy own baby, I didn't really
(36:11):
know about it, and noweveryone's talking to me about
it because everyone's coming outof the woodwork and sharing
their stories and so it's soimportant to have that week.
But equally, like you say, youdon't want to overwhelm people
and you don't want to frightenpeople who are currently
(36:31):
pregnant.
It's, it's a hard, it's a hardbalance.
It really is a hard balance,but it's.
I think it's such a great thingto do.
Um, I can see why it'd betriggering and I can see why you
might need a rest from it ortake time out of it, because it
it's so widespread, isn't it?
(36:53):
Um, and the lighting up ofbuildings and all this stuff,
that's kind of it's progressedto.
It's a lot, but I I think it'ssomething that I feel has grown
and hopefully helped people beable to talk about, about their,
their loss.
So tell me a little bit theVilomah Foundation.
(37:18):
So the first thing I'minterested in is what's the name
?
Vilomah Foundation?
Where did, where does that comefrom?
Right are?
you able to share that yeah, Iam, I'll just.
Catherine (37:33):
I always forget exact wording, so I'll just okay tell
me, tell me, why the VilomahFoundation so?
as you know, I previously hadthe pinks and blues as CIC and
people had opinions about itbeing the pinks and blues and
okay, I got that.
(37:53):
My thing with the pinks andblues was that it was around the
colors of the baby lossawareness yes, yes, and the
pinks of the highs and the bluesof the lows, yes, um, you know,
sort of like the CIC ended dueto Covid, and so I took some
time out and was thinking whatdo I want to do?
(38:15):
And the first thing was that Ineeded to look after myself.
Yes, so I didn't do anythingfor about a year, I think it was
, and then I started gettingitchy feet again.
I need to do something yeah andit hadn't worked as a cic for a
number of reasons, but one ofthe main reasons was because we
(38:37):
weren't a charity, peoplewouldn't fund us, okay, so the
first step was I'm gonna set upa charity, right, and I was
reading something and it had theSanskrit word for it, and it
was another foundation orsomething and it was in Sanskrit
(38:58):
, and I thought, oh, I wonder ifthere's a Sanskrit word for
pregnancy loss, right.
So I searched online and itcame up with Vilomah.
Oh, okay, because it meansagainst the natural order and is
used to describe a parent whohas lost a child.
The word captures the idea thatit's against nature for a child
(39:22):
to die before their parents.
Some say that the word helps toidentify with the complex grief
and joy that parents experiencewhen they have a child and then
lose them.
Florence (39:34):
Wow, I'm blown away.
That is, I had no idea what apowerful word and what a great
name.
Catherine (39:45):
So yeah.
So it's sort of like.
When I saw that, I was likethis is just meant to be.
Yes, because I've beenstruggling, you know, thinking
of it's not like most baby losscharities will name them after
their baby that they've lostbecause it's been a stillbirth
yes, whereas I've got six.
And who do I pick?
(40:06):
Yes, you know, it's always beena bit of a dilemma for me, so
yeah.
So when I came across this word, I was like this is meant to be
, this is yes, it's such aperfect um explanation of of
what pregnancy loss is.
Yes, because you know, we growup with the fairy tales of
(40:28):
everybody gets married,everybody has babies and
everybody lives happily everafter.
Florence (40:34):
Well, actually, it's not like that, for some people
yes, what a brilliant name andyou've managed to get some
funding, I believe.
Catherine (40:44):
Yes, I knew this time that I had to have a year's
funding in place to go to makeit, set it up and make it happen
, and so we applied to Awardsfor All, which is part of the
National Lottery's communityfund, and we put in for, sort of
(41:08):
like, my time to um, to projectmanage and publicity web page
and volunteer expenses workspacefor me so I can go to a core
working space and I'm not athome all the time, and so we've
(41:29):
got that and that's through tillMay next year.
So we were really lucky to getthat funding because it is
really, you know, sort of likeit meant that I didn't have to
do the web page, for example,and these are, you know, sort of
like the little things thatmake running a charity or a CIC
difficult.
Is you become the person thathas to do everything?
(41:51):
Yes, you have to do the socialmedia.
You have to sort of put in somefunding for the web page to be
done.
Yes, and took a huge amount ofwork off me because I'm not the
most IT proficient in terms ofdoing things like, yeah, yeah,
so, yeah, so, things like that,and then just like the workspace
(42:14):
, sort of like working from home.
Some days I just need to go outof the house and, yes, in a
space where I can just get myhead down, yes, and get on with
everything that's phenomenal.
Florence (42:27):
You're so what's the word?
I hate the word resilient, butit's.
It's that thing of you're sodetermined, catherine, like I
could see you when you popped upon social media as the Veloma
Foundation.
I was thinking, oh, what'sCatherine, up to?
This is a new chapter andyou're just kind of pushing
(42:52):
forward.
Always I'm so admiring of yourkind of grit and determination
at improving things.
Yeah, congratulations, it'samazing.
And how's it going in terms ofyour sessions?
Are you getting people?
Catherine (43:11):
the word spreading.
We sent out 3,000 leaflets tohospitals and GPs to let them
know that we're offering theservice.
And we do it all via Zoom nowas well, because that was the
other thing with the pinks andblues was it was face-to-face.
Venues were expensive.
There'd be a two-hour session.
(43:34):
Add on my travel time.
In the end of that you've got,you've lost a day nearly.
So doing it via zoom is so muchmore effective.
Yes, time wise.
And we have two.
No, we have four pregnancyafter loss groups a month and
(43:54):
four pregnancy loss groups permonth, and those are a maximum
of 10 people in each group.
Yes, and then I do individualone-to-one sessions for
pregnancy loss or for pregnancyafter loss um as well.
Yeah, so that funding that wegot means that I can actually
(44:15):
put my time into doing thosesessions.
It's been a slow up take, yeah,but that's okay.
I know that it takes time forword to get out and I'm not too
worried about that.
Yes, that you know.
Word is now getting out and I'mgoing to be um.
One of the things that thevilomah foundation does as well
(44:35):
is workplace training.
Yes, so one of the things is tooffer workplaces some of those
sessions to their staff.
Yeah, as well to access.
Yes, so we're getting out, thepublicity's getting out by
another avenue brilliant, reallybrilliant.
Florence (45:01):
I'm really excited to see where you go next and and
kind of, yeah, sky's the limit,yeah it is.
It's really exciting so one ofthe things that came out of the
nobody's patient project that wetalked about earlier was a
(45:23):
fantastic poem that Catherinewrote and read at the nobody's
patient workshops, and it's agreat poem because it really
demonstrates what a differenceany person can make in that
(45:45):
journey, the little things thatmake a difference.
So, catherine, would you liketo read your poem?
Catherine (45:54):
Yeah, such special people.
The doctor who guided methrough every aspect of my care
and gently told me there wasnothing that could be done for
my baby.
Who, when he returned on shift,came into my room and simply
said I am so sorry.
The paramedic who gently tookour baby from my hands and said
(46:14):
he would make sure our baby waslooked after, but he needed to
look after me right then.
The A&E nurse who asked us ifwe would like to see our baby
and hold her.
The healthcare assistant whopainstakingly tried to remove
all traces of dry blood from mewhilst allowing me my dignity.
(46:34):
The student midwife who sat withme in the hours I still had
hope and when that hope had gone.
The midwife who brought our sonto us, showing the utmost
respect for him and us.
The porter who gave my shouldera squeeze when I was being
taken for a scan.
The consultant who rang everymorning and night, despite
(46:55):
having seen me at least threetimes during the day, and coming
in on his weekend off to seehow I was.
The GPs who have just beenthere and fought for me when I
couldn't do it for myself.
The psychologist who went aboveand beyond to sit with me in my
pain and sadness.
The pathologist who arrangedfor us to bring our baby home
(47:16):
and told my husband he knew thepain as he had been there too
and it was okay for him not tobe strong all the time, because
he had been there too and it wasokay for him not to be strong
all the time.
Florence (47:26):
It's such a wonderful poem, it's.
It's so, so moving, so special,absolutely right, thank you
you're welcome.
Catherine (47:37):
I think it's just for all health professionals out
there.
It is that small thing that youcan do yeah that can really
make a difference to experienceof care yeah, which sort of
brings us to our zesty bit.
Florence (47:54):
So our zesty bit is the end, what we want people to
take away from our conversationand I guess one takeaway
straight away is what you'vejust said.
Then those little moments,those little things that show
you care, that can make such adifference and hopefully not
(48:15):
cause PTSD and and more traumato the person going through that
baby loss.
But also, looking up theVilomah Foundation might be
another zesty bit.
What do you think?
Catherine (48:33):
Yeah, I think that I am there for support.
The Vilomah Foundation is thereto support people and, you know
, if any health professionalshave got any questions, I'm more
than happy to discuss thingswith them, and if people can
(48:55):
follow me on my social media,that would be really great to
get the word out and to retweetand share on instagram.
Things like that would bereally, really helpful wonderful
.
Florence (49:11):
I will put all those links and how to get in touch
with you, yeah, in the shownotes for people, for people to
do that.
Hopefully, ripple out, rippleout and onwards.
Thank you so so much, catherine.
It's been so lovely to have aproper catch-up and it's so
(49:34):
inspiring to see you carry ontirelessly, but I'm really glad
that you're also looking afteryourself.
So thank you so much forspending the time talking to me
and sharing your story and yourjourney with the listeners of
the OBS pod thank you for havingme, for inviting me to come and
(49:57):
talk with you.
Catherine (49:57):
I've really enjoyed it.
Florence (50:02):
I very much hope you found this episode of the OBS
pod interesting.
If you have, it'd be fantasticif you could subscribe, rate and
review, on whatever platformyou find, your podcasts, as well
as recommending the OBS pod toanyone you think might find it
(50:22):
interesting.
There's also tons of episodesto explore in my back catalogue
from clinical topics, my careerand journey as an obstetrician
and life in the NHS moregenerally that I take
(50:48):
confidentiality very seriouslyand take great care not to use
any patient identifiableinformation unless I have
expressly asked the permissionof the person involved on that
rare occasion when it's beenabsolutely necessary.
If you found this episodeinteresting and want to explore
the subject a little more deeply, don't forget to take a look at
(51:10):
the program notes where I'veattached some links.
If you want to get in touch tosuggest topics for future
episodes, you can find me atTheObsPod, on Twitter and
Instagram, and you can email metheobspod at gmailcom.
(51:32):
Finally, it's very important tome to keep TheObsPod free and
accessible to as many people aspossible, but it does cost me a
very small amount to keep itgoing and keep it live on the
internet.
So if you've enjoyed myepisodes and by chance, you do
(51:53):
have a tiny bit to spare.
You can now contribute to keepthe podcast going and keep it
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Don't feel under any obligation, but if you'd like to
contribute, you now can.
Thank you for listening.
Hello, my name's Florence.
Welcome to the OBS pod.
I'm an NHS obstetrician hopingto share some thoughts and
experiences about my workinglife.
Perhaps you enjoy Call theMidwife.
Maybe birth fascinates you, oryou're simply curious about what
exactly an obstetrician is.
You might be pregnant andpreparing for birth.
(00:21):
Perhaps you work in maternityand want to know what makes your
obstetric colleagues tick.
Or you work in maternity andwant to know what makes your
obstetric colleagues tick, oryou want some fresh ideas and
inspiration.
Whichever of these is the caseand, for that matter, anyone
else that's interested, the OBSpod is for you.
Episode 177 be the difference achat with katherine.
(00:57):
Today we are welcoming to thepodcast katherine mckennan the V
the Foundation, and I've knownCatherine for some years and
she's absolutely helped pioneersome work, particularly with the
(01:18):
gap between gynecology andmaternity services and
mid-trimester, so middle ofpregnancy loss, and I'm very
excited to have her here today.
Catherine, do you want to maybesay a little bit about who you
are?
Catherine (01:37):
Yeah, well, Catherine and I'm founder of the V
Foundation, which is a charitythat supports people who've gone
through pregnancy loss, butalso people who are pregnant
after loss, and we offer freeone-to-one and group support to
(01:59):
those people as and when theyneed it people um, as and when
they need it.
Florence (02:10):
Fantastic, and I've seen you're busy on instagram
and there are lots of eventbritelinks people can can book into.
Catherine (02:13):
Yeah, to get that support just on the website,
which iswwwthevilomahfoundationorguk.
Um.
Anyone who wants to access theservice, the links on that page
perfect, and i can put that linkinto the, the show notes.
Florence (02:32):
So I'm going to go back in time a little bit,
because we first met via jilljill phillips, aka, whose shoes,
and she met you on a train.
Catherine (02:48):
Yes, tell us a little bit about that train journey,
sort of like seen Gill seen andcommunicated with her in the
twitterverse and we were at atwitter event in manchester I
think it was, and at the end ofthe day we were both going to
get the train and we wereactually getting the same train.
(03:09):
So we sat together and I foundout a little bit more about what
she was doing with the whoshoes, maternity and I shared my
story with her.
I think she's probably the onlyperson that sat and listened
through my whole story, so it'ssort of like, yeah, I bent her
(03:32):
ear a bit for the whole journeyback, but it was sharing my
story.
So I've experienced sixpregnancy losses.
Three of those are in thesecond trimester and I'd had
very different experiences ofcare.
So sometimes it was very, verygood and sometimes it was very,
(03:57):
very bad.
And that's what I was sharingwith Gill was those experiences
and particularly around how Iwas treated when I went through
my second trimester loss throughgynae and how I was treated
when I went through my secondtrimester loss with the
bereavement suite.
So the experiences were so, sodifferent.
(04:20):
And when we , Gill talking, washer brain.
You could see her brain wasturning over and you know she
was up to something.
And at the end of the journeyshe just said to me I don't know
if there's anything I can do,but if I do think of anything
that I can help, you know withyou, I'll get in touch.
(04:43):
And I thought, well, shared mystory, you know it's'll get in
touch.
And I thought, well, shared mystories, you know it's there,
it's done, and didn't reallythink much more of it.
And then I got a phone call tosay, flo, and I've been talking
and at this point I knew youthrough Twitter as well, but I
hadn't actually met you at thispoint and I've had this idea and
(05:10):
she said we're going to do awho's Shoes special which will
look at.
One of the threads that theylook at is people who've
experienced second trimesterloss, people who've experienced
second trimester loss.
And that just began a hugejourney into what turned out to
(05:31):
be an amazing resource, but wasan amazing experience as well.
So we met up and I got togethera small group of people who I
knew through the support workthat I was doing, who'd
experienced a second trimesterloss as well, and she came along
(05:52):
with Anna, the amazingillustrator, and we just
explored what the loss meant tous and it was in a really
amazing space called ShaktiWomen um, unfortunately it
(06:12):
doesn't exist anymore, but theroom itself was very empowering
because it had lots of reallygreat signs like just images of
affirmations and things likethat.
So there was a very positivevibe in the room, that it was a
safe environment.
And so there were six of us andwe just explored what our
(06:38):
losses had meant to us, whatwe've been through, the things
that had caused us distress.
Everyone in the room hadpost-traumatic stress disorder
from their losses and none of usreally had had any support
(06:59):
following our losses.
We'd been left abandoned tojust get on with life and
navigate that ourselves.
And it was.
There was laughter, there wastears, but it was a really
empowering space to be in.
And Anna captured all of thatin an amazing graphic.
(07:28):
And we looked at things likelanguage.
Particularly Language was ahuge thing and I know that
that's been quite big in thematernity workshops that have
been done around whose shoes inother areas as well.
But phrases like incompetentcervix, spontaneous abortion,
(07:48):
things like that had been usedin our experiences of of our
losses and it felt quite sort oflike brushed aside, that it
wasn't really anything to worryabout and you know it's just one
of these things that happens,whereas for you it's a
devastating experience and therewasn't the support in place
(08:13):
there to do that.
And we all had differentexperiences from being in
gynecology or being eachhospital was different, so some
people were seen undergynecology, or being each
hospital was different, so somepeople were seen under
gynecology, some people wereseen under maternity services
delivery suite, so it dependedon how many weeks you were as to
(08:35):
where you got seen, and thatwas quite distressing for for
everybody, because some peoplehad actually been on a ward, on
a maternity ward.
I myself was on a bay with otherwomen who had had
hysterectomies and um polypsremoved and you know, sort of
(08:57):
like it was just the worst placeto be and you know, sort of
like everybody did their roundsand you were just left to your
own devices, really, um, so yes,we from that jill did her magic
, which amazes me how she doesit, because the cards that she
(09:19):
developed for the who shoesproject were just so spot on.
I remember the first workshopthat I helped facilitate and
reading the card and thinkinggosh that is straight from my
mouth and you know, sort of likethinking gosh, she really did,
you know, sort of like capturedthe moment, because that's
(09:40):
exactly what I said.
And so the Nobody's's patient,we launched it and it was just
brilliant to be in the room thatfirst session that we did,
which was was it St George's, uh?
We did Kingston and St George's, yeah.
And just to be in a room fullof professionals and bereaved
(10:07):
parents and to see theconversations just coming out
and people really reallythinking through their own
practice of what they do wasreally really special you're
right.
Florence (10:22):
What happened sort of from my side was this maternity
MATEXP challenge fund came out Ithink it was about a week after
you'd Gill and and we werethinking, oh, how do we put in a
bid for this?
What would we like to do tokind of develop some further
(10:43):
resources on top of the the workwe'd already done in maternity?
And it was your story and LeeKendall's story.
Yeah, that that justimmediately we both thought
these are women that are fallingthrough gaps in care, women
that are between gynecology andmaternity, and women that are
falling through gaps in care,women that are between
(11:04):
gynecology and maternity, andwomen that are between neonatal
and maternity and women that arebetween critical care and
maternity.
And the Nobody's Patient titlecame from a tweet.
Someone wrote that I saw aboutfeeling like she was nobody's
patient and your story was sopowerful.
(11:26):
I mean, I've I I definitelyhave learned a lot from you.
And even now there's thatarbitrary before 18 weeks is
gynecology and after 18 weeks ismaternity, and it's just a line
in the sand, isn't it?
And I definitely think thingshave changed as a result of our
(11:51):
project.
But also, people are stillusing the cards.
So, like you say that stuffthat came from your mouth that
Gill and Anna and we capturedwith you.
People are still using it inworkshops.
For example, Gill and I justdid a series of workshops in
(12:15):
South West London and Croydondecided to focus on the Nobody's
Patient resources for theirworkshop, so that's a whole
another team suddenly exploringthat topic and those issues.
(12:35):
The the project was 2016, butthe ripples are still going
absolutely and that's great.
Catherine (12:45):
That's what's you know, sort of like the fact that
people are still using the gameto explore the issues.
And you know, and they arestill there.
Although things have, you know,as you said, they've changed
immensely since since then, itstill reminds people that these
things are not in our distantpast.
(13:06):
You know they, they were thingsthat happened a few years ago.
Yeah, we need to make sure thatthey don't slowly breed back
into the environment thatthey're working in.
Florence (13:19):
Yes, yeah, I wanted.
I was kind of reflecting a bitfor today and I was thinking
from my perspective.
I feel like there've been quitea few changes in the years
since we started workingtogether and I was interested to
(13:39):
know whether you feel that aswell, because you know that's
the power of co-production,isn't?
It is a doctor can say, well,we've made this, that and the
other improvement, but actuallydo you feel that there have been
positive changes?
Catherine (13:57):
I think with the national care movement pathway
that it's really highlighted theneed for care across gynae and
maternity and I think, with youknow sort of like I think every
(14:18):
hospital in England's now signedup to it.
So that gives very clearguidance on how people should be
interacting with people who'veexperienced loss and I think
it's working.
From what sort of like what Ihear it's working.
But I think that's where thoseare the places that have
(14:40):
actually the hospitals that haveinvested in their bereavement
teams.
So where bereavement teams arevery active, then it seems to
have made a huge impact.
Yes, not every hospital has afull-time bereavement team.
Florence (14:56):
Yes, so until everywhere has a full-time
bereavement team, then there'llstill be gaps in the service yes
, and it's interesting because Iwas thinking, the very last
workshop I helped lead beforethe pandemic was march 2020 and
(15:18):
we were like, should weshouldn't?
We was colchester, and that wasjointly with SANS, the
stillbirth and neonatal um deathassociation, and, uh, in
Colchester looking at thenational bereavement care
pathway using the nobody'spatient resources.
(15:40):
So it's, it's absolutely.
You're right, there's still toomuch variation, isn't there?
Catherine (15:47):
yeah, and I think, sort of you know, there's still
that thing between the cut-offstages of what's gynae and
what's maternity.
Every hospital does need tohave a bereavement suite that
just deals with loss.
Yes, um, that isn't about whatdepartment.
Yes, it falls under.
(16:09):
Yeah, or there has to be aparity between how people who go
through earlier losses andpeople who go through later
losses are treated.
Yes, and not.
Everybody wants to be, not ever.
I mean, the other side of it isnot everybody wants to be on a
bereavement suite.
(16:30):
Yes, some people just want toget into hospital, get out, be
over a runway.
So I think there has to berespect for those people that
choose not to.
Yes, go through that, it doeshave to be a choice.
Um, I know, I found it verydifficult on the bereavement
suite because there was a bookof people who'd been there
(16:51):
previously and written messagesin it and it was just like to me
.
That was just.
It overwhelmed me that you know, there was this book of all
these babies who died.
Yes, but then the sort of likebeing away from the ward and the
delivery suite meant that Iwasn't interrupted.
(17:14):
Yes, it's babies.
Florence (17:18):
Yes, yeah, I mean, it's back to the same for
everything, isn't it?
It's about individualized,personalized care, yeah, of
what's right for you in thatmoment and you staff being able
to offer you choices and read.
(17:41):
You know what works for you,what doesn't work for you yeah
because I agree, I've, I've hadcertainly looked after people
who are I don't want to see mybaby, I don't want to do
anything, I don't want anymemories.
And then others who may havehad a much earlier pregnancy
(18:03):
loss, but who feel they do needsomething tangible.
They do need something tangibleand I think we can be still
quite dismissive, particularlyof of early loss or earlier
Maybe I should say earlier, likefirst trimester, that's still
potentially two or three monthsof there's that visualization,
(18:28):
isn't there three months ofthere's that visualization,
isn't there?
Imagination of that baby?
Catherine (18:37):
that you imagined you were going to have, and I think
that that's the thing is mostpeople are.
They're trying to have a baby,so they've gone through an
emotional process of saying,right, we're ready, this is what
we want.
And then, when you get thepregnancy test, straight away
you're you've got dates in yourhead and so you've got the dates
(19:00):
for your scans, you've got thedates for your due date, and
then you know you're thinkingahead to right, what skills am I
going to need to think about?
And you know all of thosethings come into play within
those first few weeks of apregnancy.
So it's not just that they'velost a two-week pregnancy,
(19:22):
they've lost all of those hopesand dreams that they had with it
.
And I think that's where theimpact of a pregnancy loss isn't
recognized.
Um, for, as for why it does,you know, impact people who do
have those earlier losses.
And you know, sort of like,where people have had a scan,
(19:46):
maybe at six weeks, becausethey've had a bleed and they've
seen a heartbeat.
You know they've seen aheartbeat.
So when they lose their baby ateight weeks, it it wasn't
expected because they'd seen aheartbeat.
Yes, and you know, sort of like,we get told not to tell anybody
before 12 weeks and I reallydon't agree with that.
(20:09):
It's a very personal thing andI think people have the choice
to tell or not tell.
But I think by telling peopleyou have that support in place
if things do go wrong.
Yes, yeah, um, I'm not sayingtell the world and, you know, do
a Facebook, you know, sort ofannouncement, but to tell people
(20:31):
who are close to you so that ifthings do go wrong you've got
some support in place yes, yeah,that's very true, and I
definitely see that, even laterthan 12 weeks, women saying but,
but I hadn't told work yet.
Florence (20:53):
Yeah, and then there's that thing of how do I explain
not only am I suddenly off sick,but the emotion you you might
be going through when you'vebeen pregnant for four or five
months but nobody knew.
And then I know you've beendoing some work with
(21:18):
organizations in terms of well,how do you care for that person
that's working for you ifthey're in that situation?
And I think there's a lot there.
I remember vividly the thingfrom you about the social media
(21:39):
posts.
Back to school time, september,here's my little gorgeous child
going back to school orstarting reception.
And I really remember youputting out a post which was
your six children that obviouslywere not going to school, and
(22:04):
you I can't remember if theywere silhouettes, but do you
remember what I mean?
You had a picture of sixchildren not babies, children
that you'd lost and that weren'table to have that back to
school celebration, et cetera,and I found that immensely
(22:26):
powerful.
There was something about thatthat in my brain some something
flipped in terms of how Iunderstood what you'd been
through.
I think, yeah, and I think foreveryone it's different, isn't
it?
But I'm quite a visual person,so maybe that's why that post
(22:48):
and that picture kind of made mesuddenly think wow, oh yes yeah
, I think that's, you know, sortof like, especially when you're
pregnant and somebody else ispregnant.
Catherine (23:04):
So I've always been pregnant when somebody else is
pregnant.
That's close to me.
So you see them going tonursery, you see them going to
school and last year I washaving a wobble and I was trying
to work out why.
And it was like I was messagingmy niece to say how's it going
(23:25):
with your studying for yourGCSEs?
And then it hit me that Ishould have been sitting with my
child helping them throughtheir GCSEs.
Yes, because they would haveonly been two months difference
in their age, right.
So it was like, even though itwas 16 years ago, yes, it still
(23:47):
hit me because it's like Ihaven't experienced that.
You know, pregnancy loss tookaway that journey in life.
Yes, it just took that awayfrom me.
And it's things like that of youknow, sort of like friends who
are going into high schooltalking about their options for
(24:11):
what they want to do, and it'sjust sometimes it's just that
little stab in the heart.
Yeah, you know, sort of like.
It's not a con like I don'tthink sit in my diary and think,
right, today would have beenyou know, so like, because I
think sometimes people get thatimpression that's what you do,
but it isn't.
Yeah.
It is that sort of like you'rejust doing something and then
(24:34):
obviously it'll be yeah.
Ah, I should have been doingthis with yeah and I'm not.
Yes, and there's a sadnessthere.
Florence (24:44):
Yes, you know, but with the years it doesn't break
you like it did in the earlydays yeah, I'm really struck by
the fact that you said when youhad that specific focus group
that everyone had PTSD fromtheir experiences.
(25:04):
So that's like you're adding ontop of the physical trauma of
losing a child.
You're adding from the care Isay care slightly in inverted
commas from the care andtreatment you've had, where then
(25:28):
it's almost adding insult toinjury by traumatising people
psychologically.
Catherine (25:37):
Yeah, it is very.
You know, some pregnancy lossescan be extremely traumatic and
for a lot of years that wasn'trecognised by my mental health
team.
They were just all just gotcomplex grief, right.
You know, I was reallystruggling with flashbacks, like
(26:01):
I couldn't get out of the housebecause certain noises would
trigger me and it took for me toactually.
I ordered a book off on offlineon PTSD, yeah, and how to
manage it, and I thought thisspeaks to me more than anything
(26:23):
spoken to me, and I went back tomy psychologist and said this
is really helping me.
This is, you know, somethinglike if I go through this list,
this is what I've been through.
And then they started workingwith me around PTSD.
But that was, you know, that wasa good four years before they
did that.
Wow, so you've got.
(26:45):
I'm with me as well, becauseI'd gone through six losses,
although the last two therewasn't any trauma involved.
They were earlier losses, but Ihad four, you know, very
serious traumatic events in mylife.
Yeah, that had happened in ashort period of time.
(27:08):
Yes, and for nobody to pick thatup, yes and for me to have to
actually diagnose myself yeahyou know, was a huge gap in the
service and that's some of thework that, when I was um, when I
did the pinks and blues CIC wassomething that I worked very
(27:28):
hard on was to get mental healthservices to acknowledge that
pregnancy loss can be traumatic.
Yes, and I know that work hascontinued even though I haven't
been involved in it.
Yes, that's that's.
Another positive is that youknow that recognition is is now
(27:50):
there that mental healthservices, yeah, as a primary or
secondary, address the traumathat's attached to a pregnancy
loss yes, and I mean that hasbeen fantastic.
Florence (28:04):
I mean we've now got new services in my area that are
specifically for pregnancy lossor pregnancy trauma, and it's
making a difference.
Undoubtedly it's making adifference.
So I agree that's anotherreally positive change, and one
(28:27):
of the other changes I wasthinking about was the ability
to get a baby loss certificate.
Yeah, I don't know how you feelabout that yeah, I've.
Catherine (28:39):
I was one of the people that was really on the
fence about it because, okay.
So my concern was that it wouldlead to anti-abortion and
people wanting by saying ifyou're recognising it as lie,
(29:01):
then that would impact theAbortion Act.
So that was where my hesitationwas about it, because I believe
that everybody has a choice yes, and that choice should be
there for them whatever stagethey are in their pregnancy.
And so I was very much on thefence about it, because I
wondered if there was anotheragenda to actually putting it
(29:26):
forward or something.
Putting it forward or something.
It's not something I personallywanted when I went through my
losses, because the hospitalgave me a little certificate,
yes, so and I had something fromthe funeral directors as well.
So I had things and at the endof the day, I know what I went
through yes, um, I don't need apiece of paper to tell me that,
(29:50):
but I know it's brought greatcomfort to a lot of people and
when I'm working with people now, I'll say to them have you
applied for, is it something youwould like to do?
Yes, I can explain that.
You know it is there.
If they wish to, some say yes, I, I would really like that.
That'd be really helpful.
Other people say, no, I don'tneed it.
Yeah, so it's.
(30:11):
You know, as long as it stays apersonal choice, yes, then then
I'm happy with that.
I, you know, sort of like, Idon't want to see legislation
that everybody has to, because Ithink even some parents of
stillbirth really don't want tohave to do that whole
registering.
And you know it's reallydistressing.
Um, yes, so I do think it has tostay a personal choice.
Florence (30:34):
Yes, yeah, so we're recording this partly we wanted
to catch up, but also we'regoing to release this for baby
loss awareness week.
Yeah, tell me a little bitabout baby loss awareness week,
(30:56):
what that means to you when Ihad my losses I didn't know
anything about pregnancy lossawareness week.
Catherine (31:06):
It was a lot of years later that I found out that it
was something that happened.
And again, it's something thatI have two thoughts on.
One is that it can be sooverwhelming.
When you see all of the posts,it can be quite triggering on
(31:28):
social media.
So I tend to have a bit of asocial media break for myself.
Obviously I can't have a totalsocial media break because I
have to do social media.
Yes, the loma foundation.
But what I found in the in thepast is I always take a few days
off after Baby Loss AwarenessWeek just to regroup and just to
(31:53):
sort of like reflect on onwhat's happened during the week.
But I think what for me is thewave of light.
I just find that's such aspecial special event and that
happens on the 15th at seveno'clock.
Wherever in the world you are,it's seven o'clock and it's that
(32:15):
constant wave of light goingaround the world remembering all
those babies lost, and that tome is is really beautiful and I
look absolutely love thatevening and I get my candles out
and I do a little sort of likememorial display type thing and
you know, sort of I I connectwith my babies and I think about
(32:38):
them, but I also think aboutall of the other people who are
experiencing that.
You know those people who aregoing through it for the first
time.
You know what it must be likefor them having, you know, to be
part of that club.
You know the club nobody wantsto join and I think it is really
(32:59):
important to have an awarenessweek because people are more
open about it and it helpspeople, those who are in your
network to understand what babyloss is about.
And you know, I think it itchallenges workplaces to really
(33:21):
think about how they supporttheir staff.
I think it challenges thehospitals to recognise it.
I think one of the things that Ifound really difficult was in
my local hospital on Baby LossAwareness Week.
It was in a little room awayfrom the main hospital and I was
(33:43):
like well, you didn't do thatfor Down Syndrome Day, you
didn't do that for PrematurityAwareness.
Why are you doing that?
Why is it not in the foyerwhere people will see it?
Yes, you know, sort of likethat's changed now it is.
You know it is a hospital-wideevent and, yes, it gives an
opportunity as well, forhospitals to put on their own
(34:06):
services, which I think isreally nice.
I think it's, you know, sort oflike to actually meet with the
staff who supported you on yourjourney, in that environment
where you're remembering and youknow that they're remembering
with you.
Yeah, I think is very specialas well.
Yeah, um, and you know thedifferent ways that people are
(34:29):
doing that it's, you know, sortof like.
I struggle with it being in.
Most of them are in churches.
I, you know sort of like,because it's just, it's not
inclusive.
Yes, even though you can put onthe sign all faiths welcome,
you don't necessarily feelcomfortable going into a
(34:50):
particular building of worship.
I do think you know it'd benicer if they were at, you know,
sort of like, other halls oryeah places that do events.
Florence (35:02):
Yeah, I'm not so religious focused yes, I agree,
I agree with you.
The wave of light is reallypowerful and I quite like that
in the same way you've justtalked about for the staff,
because I personally have notexperienced baby loss myself,
(35:27):
but I have experienced a lot ofbaby loss at my work and I'm
able to participate in that waveof light and I can tell you, I
can name a lot of babies yeahand that it's really nice to do
that wave of light and and thinkabout them, because it does
(35:48):
does emotionally touch you as amember of staff.
We're human, but I always findit slightly tricky because it's
a taboo subject and we need totalk about it.
And I have people that come toclinic and go.
Until I experienced it and lostmy own baby, I didn't really
(36:11):
know about it, and noweveryone's talking to me about
it because everyone's coming outof the woodwork and sharing
their stories and so it's soimportant to have that week.
But equally, like you say, youdon't want to overwhelm people
and you don't want to frightenpeople who are currently
(36:31):
pregnant.
It's, it's a hard, it's a hardbalance.
It really is a hard balance,but it's.
I think it's such a great thingto do.
Um, I can see why it'd betriggering and I can see why you
might need a rest from it ortake time out of it, because it
it's so widespread, isn't it?
(36:53):
Um, and the lighting up ofbuildings and all this stuff,
that's kind of it's progressedto.
It's a lot, but I I think it'ssomething that I feel has grown
and hopefully helped people beable to talk about, about their,
their loss.
So tell me a little bit theVilomah Foundation.
(37:18):
So the first thing I'minterested in is what's the name
?
Vilomah Foundation?
Where did, where does that comefrom?
Right are?
you able to share that yeah, Iam, I'll just.
Catherine (37:33):
I always forget exact wording, so I'll just okay tell
me, tell me, why the VilomahFoundation so?
as you know, I previously hadthe pinks and blues as CIC and
people had opinions about itbeing the pinks and blues and
okay, I got that.
(37:53):
My thing with the pinks andblues was that it was around the
colors of the baby lossawareness yes, yes, and the
pinks of the highs and the bluesof the lows, yes, um, you know,
sort of like the CIC ended dueto Covid, and so I took some
time out and was thinking whatdo I want to do?
(38:15):
And the first thing was that Ineeded to look after myself.
Yes, so I didn't do anythingfor about a year, I think it was
, and then I started gettingitchy feet again.
I need to do something yeah andit hadn't worked as a cic for a
number of reasons, but one ofthe main reasons was because we
(38:37):
weren't a charity, peoplewouldn't fund us, okay, so the
first step was I'm gonna set upa charity, right, and I was
reading something and it had theSanskrit word for it, and it
was another foundation orsomething and it was in Sanskrit
(38:58):
, and I thought, oh, I wonder ifthere's a Sanskrit word for
pregnancy loss, right.
So I searched online and itcame up with Vilomah.
Oh, okay, because it meansagainst the natural order and is
used to describe a parent whohas lost a child.
The word captures the idea thatit's against nature for a child
(39:22):
to die before their parents.
Some say that the word helps toidentify with the complex grief
and joy that parents experiencewhen they have a child and then
lose them.
Florence (39:34):
Wow, I'm blown away.
That is, I had no idea what apowerful word and what a great
name.
Catherine (39:45):
So yeah.
So it's sort of like.
When I saw that, I was likethis is just meant to be.
Yes, because I've beenstruggling, you know, thinking
of it's not like most baby losscharities will name them after
their baby that they've lostbecause it's been a stillbirth
yes, whereas I've got six.
And who do I pick?
(40:06):
Yes, you know, it's always beena bit of a dilemma for me, so
yeah.
So when I came across this word, I was like this is meant to be
, this is yes, it's such aperfect um explanation of of
what pregnancy loss is.
Yes, because you know, we growup with the fairy tales of
(40:28):
everybody gets married,everybody has babies and
everybody lives happily everafter.
Florence (40:34):
Well, actually, it's not like that, for some people
yes, what a brilliant name andyou've managed to get some
funding, I believe.
Catherine (40:44):
Yes, I knew this time that I had to have a year's
funding in place to go to makeit, set it up and make it happen
, and so we applied to Awardsfor All, which is part of the
National Lottery's communityfund, and we put in for, sort of
(41:08):
like, my time to um, to projectmanage and publicity web page
and volunteer expenses workspacefor me so I can go to a core
working space and I'm not athome all the time, and so we've
(41:29):
got that and that's through tillMay next year.
So we were really lucky to getthat funding because it is
really, you know, sort of likeit meant that I didn't have to
do the web page, for example,and these are, you know, sort of
like the little things thatmake running a charity or a CIC
difficult.
Is you become the person thathas to do everything?
(41:51):
Yes, you have to do the socialmedia.
You have to sort of put in somefunding for the web page to be
done.
Yes, and took a huge amount ofwork off me because I'm not the
most IT proficient in terms ofdoing things like, yeah, yeah,
so, yeah, so, things like that,and then just like the workspace
(42:14):
, sort of like working from home.
Some days I just need to go outof the house and, yes, in a
space where I can just get myhead down, yes, and get on with
everything that's phenomenal.
Florence (42:27):
You're so what's the word?
I hate the word resilient, butit's.
It's that thing of you're sodetermined, catherine, like I
could see you when you popped upon social media as the Veloma
Foundation.
I was thinking, oh, what'sCatherine, up to?
This is a new chapter andyou're just kind of pushing
(42:52):
forward.
Always I'm so admiring of yourkind of grit and determination
at improving things.
Yeah, congratulations, it'samazing.
And how's it going in terms ofyour sessions?
Are you getting people?
Catherine (43:11):
the word spreading.
We sent out 3,000 leaflets tohospitals and GPs to let them
know that we're offering theservice.
And we do it all via Zoom nowas well, because that was the
other thing with the pinks andblues was it was face-to-face.
Venues were expensive.
There'd be a two-hour session.
(43:34):
Add on my travel time.
In the end of that you've got,you've lost a day nearly.
So doing it via zoom is so muchmore effective.
Yes, time wise.
And we have two.
No, we have four pregnancyafter loss groups a month and
(43:54):
four pregnancy loss groups permonth, and those are a maximum
of 10 people in each group.
Yes, and then I do individualone-to-one sessions for
pregnancy loss or for pregnancyafter loss um as well.
Yeah, so that funding that wegot means that I can actually
(44:15):
put my time into doing thosesessions.
It's been a slow up take, yeah,but that's okay.
I know that it takes time forword to get out and I'm not too
worried about that.
Yes, that you know.
Word is now getting out and I'mgoing to be um.
One of the things that thevilomah foundation does as well
(44:35):
is workplace training.
Yes, so one of the things is tooffer workplaces some of those
sessions to their staff.
Yeah, as well to access.
Yes, so we're getting out, thepublicity's getting out by
another avenue brilliant, reallybrilliant.
Florence (45:01):
I'm really excited to see where you go next and and
kind of, yeah, sky's the limit,yeah it is.
It's really exciting so one ofthe things that came out of the
nobody's patient project that wetalked about earlier was a
(45:23):
fantastic poem that Catherinewrote and read at the nobody's
patient workshops, and it's agreat poem because it really
demonstrates what a differenceany person can make in that
(45:45):
journey, the little things thatmake a difference.
So, catherine, would you liketo read your poem?
Catherine (45:54):
Yeah, such special people.
The doctor who guided methrough every aspect of my care
and gently told me there wasnothing that could be done for
my baby.
Who, when he returned on shift,came into my room and simply
said I am so sorry.
The paramedic who gently tookour baby from my hands and said
(46:14):
he would make sure our baby waslooked after, but he needed to
look after me right then.
The A&E nurse who asked us ifwe would like to see our baby
and hold her.
The healthcare assistant whopainstakingly tried to remove
all traces of dry blood from mewhilst allowing me my dignity.
(46:34):
The student midwife who sat withme in the hours I still had
hope and when that hope had gone.
The midwife who brought our sonto us, showing the utmost
respect for him and us.
The porter who gave my shouldera squeeze when I was being
taken for a scan.
The consultant who rang everymorning and night, despite
(46:55):
having seen me at least threetimes during the day, and coming
in on his weekend off to seehow I was.
The GPs who have just beenthere and fought for me when I
couldn't do it for myself.
The psychologist who went aboveand beyond to sit with me in my
pain and sadness.
The pathologist who arrangedfor us to bring our baby home
(47:16):
and told my husband he knew thepain as he had been there too
and it was okay for him not tobe strong all the time, because
he had been there too and it wasokay for him not to be strong
all the time.
Florence (47:26):
It's such a wonderful poem, it's.
It's so, so moving, so special,absolutely right, thank you
you're welcome.
Catherine (47:37):
I think it's just for all health professionals out
there.
It is that small thing that youcan do yeah that can really
make a difference to experienceof care yeah, which sort of
brings us to our zesty bit.
Florence (47:54):
So our zesty bit is the end, what we want people to
take away from our conversationand I guess one takeaway
straight away is what you'vejust said.
Then those little moments,those little things that show
you care, that can make such adifference and hopefully not
(48:15):
cause PTSD and and more traumato the person going through that
baby loss.
But also, looking up theVilomah Foundation might be
another zesty bit.
What do you think?
Catherine (48:33):
Yeah, I think that I am there for support.
The Vilomah Foundation is thereto support people and, you know
, if any health professionalshave got any questions, I'm more
than happy to discuss thingswith them, and if people can
(48:55):
follow me on my social media,that would be really great to
get the word out and to retweetand share on instagram.
Things like that would bereally, really helpful wonderful
.
Florence (49:11):
I will put all those links and how to get in touch
with you, yeah, in the shownotes for people, for people to
do that.
Hopefully, ripple out, rippleout and onwards.
Thank you so so much, catherine.
It's been so lovely to have aproper catch-up and it's so
(49:34):
inspiring to see you carry ontirelessly, but I'm really glad
that you're also looking afteryourself.
So thank you so much forspending the time talking to me
and sharing your story and yourjourney with the listeners of
the OBS pod thank you for havingme, for inviting me to come and
(49:57):
talk with you.
Catherine (49:57):
I've really enjoyed it.
Florence (50:02):
I very much hope you found this episode of the OBS
pod interesting.
If you have, it'd be fantasticif you could subscribe, rate and
review, on whatever platformyou find, your podcasts, as well
as recommending the OBS pod toanyone you think might find it
(50:22):
interesting.
There's also tons of episodesto explore in my back catalogue
from clinical topics, my careerand journey as an obstetrician
and life in the NHS moregenerally that I take
(50:48):
confidentiality very seriouslyand take great care not to use
any patient identifiableinformation unless I have
expressly asked the permissionof the person involved on that
rare occasion when it's beenabsolutely necessary.
If you found this episodeinteresting and want to explore
the subject a little more deeply, don't forget to take a look at
(51:10):
the program notes where I'veattached some links.
If you want to get in touch tosuggest topics for future
episodes, you can find me atTheObsPod, on Twitter and
Instagram, and you can email metheobspod at gmailcom.
(51:32):
Finally, it's very important tome to keep TheObsPod free and
accessible to as many people aspossible, but it does cost me a
very small amount to keep itgoing and keep it live on the
internet.
So if you've enjoyed myepisodes and by chance, you do
(51:53):
have a tiny bit to spare.
You can now contribute to keepthe podcast going and keep it
free via my link to buy me acoffee and keep it free via my
link to buy me a coffee.
Don't feel under any obligation, but if you'd like to
contribute, you now can.
Thank you for listening.
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