February 1, 2024 • 20 mins
Creed is missing the majority of his brain. He essentially only has his brain stem and all of his other brain is missing. Doctors deemed her child deemed incompatible with life, but Creed has defied the odds is now 9 years old. Melanie, Creed's mom, shares their story. What is anticipatory grief? It is the emotions associated with grief before the expected loss actually happens. -- Think of it as
"What will never be."
Creed's Journey: https://www.facebook.com/creedsjourney
Webpage: https://www.avmalliance.org
Go Fund Me: https://www.gofundme.com/f/avmalliance
Our FB Page: https://www.facebook.com/AVMAlliance
Our FB Group: https://www.facebook.com/groups/325321586185434
Instagram: https://www.instagram.com/avmalliance/
TikTok: https://www.tiktok.com/@avmalliance
YouTube: https://www.youtube.com/@avmalliance
Personal Blog: https://www.caringbridge.org/visit/kylerlewis
Twitter: https://twitter.com/avmawareness
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Raylene (00:02):
Hi there, and thank you for joining us on AVM Alliance,
a pediatric podcast for familiesand friends whose lives have
been affected by traumatic braininjury, rare disease, brain
disorders, or stroke.
The purpose of this podcast isto focus on the kids side of
brain injury with honest talk,news, information, and
discussion for our community.
(00:24):
Being a parent of a medicallycomplex child is an extremely
difficult path to suddenly findyourself on.
I'm Raylene Lewis, and my sonKyler suffered a hemorrhagic
stroke at age 15.
Thank you for joining us.
A big hello to all and happyRare Disease Awareness Month.
As a reminder, February 29ththis year is Rare Disease Day.
(00:48):
Now, my husband said that my preinterview intros on this podcast
are just way too formal.
So you are now listening to myfirst attempt at casual
conversation with myself.
Do do do.
So before we get started withtoday's guests, I thought I
would share a bit.
Last month, after being seizurefree, Kyler reset the clock.
(01:12):
Resetting the clock is a commonterm in the epilepsy world and
it seems like we're alwaysmeasuring how long it's been
since the last seizure.
For Kyler, It was five months.
Kyler had a cluster of seizuresthe second week in January and
it required emergency rescuemedicine, an ambulance ride, dad
(01:32):
using the ambu bag because Kylerquit breathing for just a bit
and it was a mess.
So I was feeling, let's justsay, a little bit extra pouty
after that.
the world of having a complexmedical kiddo, I suppose.
Well, anyway, I opened up anemail sent to AVM Alliance and
there staring at me was aninvitation by the International
(01:55):
Pediatric Stroke Organization toattend their medical conference
in Toronto, Canada in March.
I was, to say the least, I wasabsolutely shocked that the IPSO
had invited our non profit tomingle with their doctors.
And after looking at theinvitation, I clicked on the
conference agenda, and there isgoing to be a lot of
presentations on brain vesseldisease this go around.
(02:18):
So I really, I really, reallywanted to attend.
Okay, why?
That's a good question.
I wanted to learn as much of thelatest information as a realtor
with no medical background canabsorb.
But even more importantly, Iwanted to be there to introduce
AVM Alliance to these doctors asan advocate for the pediatric
(02:38):
stroke and brain vessel diseasecommunity.
The biggest problem is how I'mgoing to get from little old
Texas to Canada because you'vegot to fly, stay at a hotel,
travel.
It just costs so much money.
And as y'all might have seen onthe news, remember I'm a real
estate agent and house sales area bit, well, slow.
(02:59):
Right now, and our nonprofitcommunity has absolutely zero
funds to help.
So my wanting to go was kind ofhanging on a wish and a prayer
until earlier today, my sweet,sweet husband sent me a text.
He said, you are about to be soexcited.
and I'm thinking what on earth,right?
(03:19):
And the next thing I get is apurchase receipt for his and my
plane ticket to go to Torontoand the total cost was 14.
07.
14.
07.
I am so confused at this pointbecause I know it would be
impossible for Kyle and I to flyto this conference from Texas to
(03:39):
Canada for 14.
07.
So, It turns out that beforeKyler's brain bleed and the
pandemic, and we're talking nowthree plus years ago in 2020,
Kyle had bought airplane andconcert tickets to take me to
see Taylor Swift in concert forour anniversary.
Lots of people like Taylor'smusic.
(04:00):
I am no exception, okay?
So he knew it was something Ihad always wanted to do, go see
Taylor perform, and it was goingto be like this super big
surprise.
Well, it turns out even thebigger surprise for me and my
future was COVID 19.
Which, her concert wascancelled, I still have never
gotten to see Taylor perform,and then my son had a stroke.
(04:23):
I would have much preferred theTaylor Swift surprise to the
surprise, your son is bleedingin his brain and has a rare
disease.
And well, those airline ticketswere long forgotten.
Until Kyle looked up the airfarecost on the website and saw we
had a credit when he logged in.
(04:44):
So I'm excited to announce thatAVM Alliance will be at the IPSO
conference and is super lookingforward to meeting all those
superhero doctors at theHospital for Sick Children in
Canada.
Now, if I can just figure outhotel money.
Let's move on.
With February being Rare DiseaseAwareness Month, today I want to
(05:04):
introduce everyone to Melanie.
Her son, Creed, was originallydiagnosed with a very rare
condition called porncephalywhile she was pregnant.
And this eventually progressedto a diagnosis of hydroencephaly
when she was 32 weeks.
Creed is missing the majority ofhis brain.
He essentially only has hisbrain stem and all The rest of
(05:27):
his brain is missing.
Doctors have deemed her childincompatible with life, but
Creed has defied the odds and isnow nine years old.
Melanie, thank you so much forjoining us.
Hi.
So tell us a little bit aboutyour journey and your son.
Melanie Oellig (05:44):
Originally, I got pregnant right when I turned
20 and our anatomy scan, theyjust found some abnormalities.
He had a heart murmur and thenthe front of his brain was
really squished together.
And there was a cyst on the leftside of his brain.
They were just concerned becausethey said it was usually like a
(06:04):
genetic abnormality.
They did an amniocentesis.
And everything came back normal,but that really only tests the
most common genetic mutations.
And when I went in at 22 weeks,he had had a stroke and 10
millimeters of his brain haddeteriorated.
They diagnosed him with poorencephaly originally, but he had
(06:24):
more strokes and more of hisbrain deteriorated.
And they ended up diagnosing himwith hydoencephaly.
And then they diagnosed him withhydrocephalus.
They just monitored him reallyclosely because his head was
retaining, you know, CSF and itwas growing so fast, a lot
faster than his body.
They pretty much said, you know,the prognosis is not very good
(06:46):
for kids that are born likethis.
They usually don't live verylong.
And then I went in at like, 38weeks for one of my weekly
ultrasounds and my ultrasoundtech went and got the doctor
because she was seeing what sheassumed were seizures on the
ultrasound and I'd mentioned itto the doctor because I was
like, it's almost like my wholestomach starts shaking and it's
(07:08):
really weird because it doesn'tfeel like when he has the
hiccups or anything like that.
And the doctor pretty much toldher, yeah, those are seizures.
We can't 100 percent confirm itbecause we can't do an EEG on a
baby.
He was like, but the repetitivemovements and the duration makes
me think that it's a seizure.
So they did a non stress testand he did not pass the non
(07:32):
stress test.
So they induced me that nightand told, you know, they pretty
much told me like, he's notgoing to live for more than just
a few hours.
Obviously, that's not true.
He's almost nine.
So I delivered him at 38 weeksand they took him to the NICU.
And he stayed there for likefour days and he was eating by
(07:53):
himself and doing everything thebabies are supposed to do.
So they pretty much handed methis kid and said, good luck.
They didn't tell me like who I'msupposed to follow up with or to
see these specialists.
They were just like, look, he'sgoing to die.
Like that's.
Wow.
Like, just take them home, lovethem while you have them.
So it was kind of scary becauseI was a first time mom and had
(08:15):
more strokes since then, but wedidn't know about his genetic
mutation until he was seven.
It pretty much just destroys allthe basement membranes in your
body.
And it causes all the vessels tobe extremely weak, which puts
them at a very high risk forstrokes and brain bleeds.
You can only treat the symptomsof gold syndrome.
You can try and control theblood pressure to lower their
(08:38):
risk of a stroke, not giveNSAIDs to lower the risk of a
brain
Raylene (08:43):
bleed.
One of the things that caught myattention that you said when you
were telling your story is thatCreed's shunt has failed a lot
of times.
And is that because he continuesto have brain bleeds?
It's
Melanie Oellig (08:54):
partially because of the brain bleeds
because the blood coagulates inthe shunt and then it blocks it.
The other part is because he hashad so many strokes and it's
deteriorated part of his brainmatter, there's just a lot of
brain matter floating aroundthat's not connected anymore and
it's in little pieces so ittends to clog the shunt.
(09:15):
And then because of therecurrent brain bleeds and
strokes, the protein count in aCSF is super high, and that
makes the CSF like super thick,and it can also cause issues
with like the shut draining.
Scans don't always show whatthey're supposed to, especially
with kids that have braindamage.
Raylene (09:33):
What is something that keeps coming up that you want
people to know about Creed oreven about medical moms?
Melanie Oellig (09:40):
I mean, just mostly There is a lot of
opinions about kids like my kidthat, you know, some people
don't believe that we should Domedical intervention or we
should give medications that weshould just put them on hospice
and let them pass But the wholething is is that they don't know
your child Like I know my childbetter than anybody else.
(10:04):
I'm his expert.
I'm with him Wolf 24 hours a dayfor seven years now.
I work night shift, but I No,everything about him and I
wouldn't do something to him andnot for him.
I'm not going to put him throughsomething that's going to
prolong his life.
That won't improve the qualityof life and that's the whole
(10:27):
thing.
You know, we chose.
Quality over quantity, as longas he's happy and he's
comfortable, we will do certainmedical interventions.
Listen to the mom or thecaregiver of someone like this
because they know them betterthan anybody.
I can't tell you how many timesI've bought Creden and been
(10:49):
like, I don't know what's wrong,but something's wrong.
Something's not right.
And his doctors have ran thetests that I asked them to run.
I'm in it.
Something's wrong, and that'swhat you need as a medical mom,
is people who listen to you anddon't make you feel like you're
crazy for saying, you know,something, I don't know what it
(11:10):
is, but something's wrong.
You second guess yourself.
You've been crazy because you'relooking at your kid and there's
only minimal changes to vitals,whatever, but you could feel it.
You have the gut intuition thatsomething is wrong, and you want
to get out of it.
And sometimes it takes months tofigure it out, but you just have
to follow.
Raylene (11:26):
Your intervention, you know what?
I think that's excellent advice.
I feel the very same way when wetook Kyler to the local
pediatrician here and I said,Hey, look, something is really
wrong.
Like, it's really wrong.
And they were like, no, no, hejust has a migraine.
We'll give him a shot.
Go take him and put him back tobed.
And like every fiber of my beingwas like, I don't think so.
(11:48):
This is not.
This is not right, but it'sreally hard.
A lot of times for I thinkparents and moms to second guess
themselves on whether, you know,am I crazy or is there really,
really something wrong becausedoctors are experts in a field
that we don't necessarily knowthat much about.
Melanie Oellig (12:06):
So I think there's definitely a balance.
People will accuse you of doctorshopping or whatever, but it's
why I research so hard when Ifind his doctor is because I
need people that are going to.
Stand behind me and be like,look, this is what we need.
And this is where we're going.
And if mom's not comfortablegoing home today, then they're
(12:26):
staying in the hospital.
Raylene (12:28):
I really appreciate you sharing your story and telling
us about Creed.
A lot of times I feel like yousay to us other medical moms,
what we're all thinking.
About things with with doctorsand other people and and I just
really appreciate your selfconfidence.
Melanie Oellig (12:45):
Oh, thank you That come with all of this
they're normal I am a greatcompartmentalist.
I compartmentalize everythingand shove it away and in its
little box and pretend like it'snot there until I eventually
explode.
And then I cry for like threedays and then I shove it all
(13:06):
back in that box.
Because as his mom, I would loveto keep him with me forever.
But as a medical professional, Iknow that I can't let him
suffer, so I, I can't be his momwhen we're in situations where
I'm choosing between life ordeath because I can't let my
(13:28):
emotions get involved in thosemedical decisions.
Not everybody is great atseparating the two, but I just
look at it as I would rather himbe comfortable.
And have a quality of life, thenbe suffering and prolong his
life.
(13:49):
And with that, and knowing thatmy son is terminal and he's
gonna die, there's just a lot ofgrief.
And ambiguous grief is reallyweird because you're grieving
somebody who's still alive andIt's not always just when your
kid is terminal, you imaginethis whole life for them and
them, you know, growing up andgraduating and getting married
(14:11):
and having babies and livingthis long happy life.
And when your kid has a strokeor a brain injury, even just
like severe autism or somethinglike that, like that whole life
that you imagine just getsripped away from you and The
grief of it is real.
Like there are days where Iliterally even nine years, you
(14:35):
know, into this that I just cryand I can't, my heart just can't
take it because I can'tunderstand why it happened to my
kid.
And I, Grieve, you know, hisfirst words, his first steps.
I'm never going to see him getmarried.
I'm never going to see him havekids.
I don't get to see him grow up.
(14:56):
Like I own a plot for him.
I have a whole funeral plannedout.
I know he's going to die.
And the grief from that somedays is.
And I feel like I'm drowning andmy husband has more than one
time had to pick me up off theshower floor because I just
can't I don't have it in meanymore to get off the floor and
(15:18):
I get so tired of fighting foreverything for him.
So when those days come, I haveto give myself grace.
I have to let myself.
Be okay with not being okay.
And for a long time, that wasthe hardest thing because
everybody was just like, bethankful he's alive, be thankful
(15:38):
he's this.
And I'm like, I didn't say Iwasn't thankful he was alive.
I said, I was tired.
Like there's a difference.
The immense amount of stress onmoms that have kids like this
and learning how to deal withthe grief and everything else,
you just have to be gentlebecause it's not easy to be in
this position.
(15:58):
Watching everybody else's lifemove on around you, and you just
feel like you're stuck becauseyou're waiting to lose your
child.
It's exhausting in and ofitself, and you know, you just
have to build a tribe for themost part.
I mean, my tribe is nurses anddoctors and, you know,
(16:21):
therapists and people that arearound us every day.
They understand, you know, andthen I have a few friends that
have kids that are similar toCreed and some of their kids
have already passed and, youknow, I'm very close with them
and those people, I guess, makeit a little bit easier to get
(16:42):
through the days where I'm notokay, because they don't expect
me to pretend like I'm okay, andthe ones that have already lost
their kids, Understand theambiguous grief and they're
there to help me through thatprocess.
And you know, if you're married,that's another big thing.
(17:05):
The stress on a marriage, likethe divorce rate for parents of
special needs kids, not even,you know, medically fragile or
terminally ill, is like 75%.
Because of the stress that itputs on your marriage and my
husband's learned to tune intome He'll walk in and he's like
you're not okay, you know, likeyou're not you're physically
(17:26):
here, but you're not mentallyhere You're stuck in your head,
but it took a lot of years toget there It took until about
four years ago when I finallyStarted saying, Hey, I'm not
okay for him to realize thesigns of me pulling away.
And so you just have tocommunicate with everybody, even
if not everybody can understand,because I've had plenty of
(17:47):
people tell me that I'm justbeing dramatic or I'm attention
seeking.
And I'm like, no, I'm expressingmy emotions.
And I do express a lot of themon social media, because at 20
years old, I had a kid that theytold me was going to die and
he's now nine.
And I had to learn how tonavigate the medical system.
And learn how to deal with myemotions and everything else on
(18:09):
my own at 20 and all of myfriends and everybody else is
having perfectly healthy babiesand I'm like, you know, I don't
know where to go with this.
I don't know anybody like me.
So I share all of that so thatsomeone that does have a kid
like me doesn't feel so alone.
Raylene (18:24):
And if somebody wanted to follow you and follow your
story, what's the best way forthem to do that?
Melanie Oellig (18:29):
Most of what I share is on Facebook.
I think it's a blog, but it'scalled Creed's Journey.
Raylene (18:35):
I will include the link in the comments and I would say
I think there just comes a pointwhen everybody around you
expects you to be okay ordoesn't want to hear or see that
you're not and I just can'tpretend that everything's just
fine for the general communityanymore.
Well, thank you so very much forall your advice and information
(18:55):
and sharing your story today.
Thank you for having me.
All the best to you and Creedand we'll continue to follow you
on Facebook on Creed's Journey.
Thank you.
The focus of this month's Thingsto Think About is based on the
children's book, When Meeting aMiracle, written by Josh
Coleman.
Josh's daughter, Fallon, wasborn with a very rare genetic
disorder.
(19:16):
She was given a 5 percent chanceof surviving delivery and even
lower odds post delivery.
As a family, he and his wifespent 18 months in the hospital,
a year of which was spent in adifferent state.
This book was written to bringcomfort to families that are up
against tremendous odds and forthose parents experiencing
(19:38):
extraordinary pain with the lossof a child.
His narrative serves as areminder that every child is a
miracle.
For those whose time with theirmiracle is brief, Josh reminds
us the opportunity to meet thatmiracle is a beacon of light in
the darkness.
Regardless of where you findyourself in life, this book
(19:59):
underscores the importance ofpersevering because we all have
a purpose.
A heartfelt thank you to Joshfor this impactful reminder.
And as always, if you havequestions, have a topic you
would like to hear about, don'tbe shy.
Share it in the comments and letus know.
(20:20):
And if you liked what you heardtoday, please go online and rate
this podcast.
Remember, you're never walkingthis journey alone.
Take care, y'all.
Hi there, and thank you for joining us on AVM Alliance,
a pediatric podcast for familiesand friends whose lives have
been affected by traumatic braininjury, rare disease, brain
disorders, or stroke.
The purpose of this podcast isto focus on the kids side of
brain injury with honest talk,news, information, and
discussion for our community.
(00:24):
Being a parent of a medicallycomplex child is an extremely
difficult path to suddenly findyourself on.
I'm Raylene Lewis, and my sonKyler suffered a hemorrhagic
stroke at age 15.
Thank you for joining us.
A big hello to all and happyRare Disease Awareness Month.
As a reminder, February 29ththis year is Rare Disease Day.
(00:48):
Now, my husband said that my preinterview intros on this podcast
are just way too formal.
So you are now listening to myfirst attempt at casual
conversation with myself.
Do do do.
So before we get started withtoday's guests, I thought I
would share a bit.
Last month, after being seizurefree, Kyler reset the clock.
(01:12):
Resetting the clock is a commonterm in the epilepsy world and
it seems like we're alwaysmeasuring how long it's been
since the last seizure.
For Kyler, It was five months.
Kyler had a cluster of seizuresthe second week in January and
it required emergency rescuemedicine, an ambulance ride, dad
(01:32):
using the ambu bag because Kylerquit breathing for just a bit
and it was a mess.
So I was feeling, let's justsay, a little bit extra pouty
after that.
the world of having a complexmedical kiddo, I suppose.
Well, anyway, I opened up anemail sent to AVM Alliance and
there staring at me was aninvitation by the International
(01:55):
Pediatric Stroke Organization toattend their medical conference
in Toronto, Canada in March.
I was, to say the least, I wasabsolutely shocked that the IPSO
had invited our non profit tomingle with their doctors.
And after looking at theinvitation, I clicked on the
conference agenda, and there isgoing to be a lot of
presentations on brain vesseldisease this go around.
(02:18):
So I really, I really, reallywanted to attend.
Okay, why?
That's a good question.
I wanted to learn as much of thelatest information as a realtor
with no medical background canabsorb.
But even more importantly, Iwanted to be there to introduce
AVM Alliance to these doctors asan advocate for the pediatric
(02:38):
stroke and brain vessel diseasecommunity.
The biggest problem is how I'mgoing to get from little old
Texas to Canada because you'vegot to fly, stay at a hotel,
travel.
It just costs so much money.
And as y'all might have seen onthe news, remember I'm a real
estate agent and house sales area bit, well, slow.
(02:59):
Right now, and our nonprofitcommunity has absolutely zero
funds to help.
So my wanting to go was kind ofhanging on a wish and a prayer
until earlier today, my sweet,sweet husband sent me a text.
He said, you are about to be soexcited.
and I'm thinking what on earth,right?
(03:19):
And the next thing I get is apurchase receipt for his and my
plane ticket to go to Torontoand the total cost was 14.
07.
14.
07.
I am so confused at this pointbecause I know it would be
impossible for Kyle and I to flyto this conference from Texas to
(03:39):
Canada for 14.
07.
So, It turns out that beforeKyler's brain bleed and the
pandemic, and we're talking nowthree plus years ago in 2020,
Kyle had bought airplane andconcert tickets to take me to
see Taylor Swift in concert forour anniversary.
Lots of people like Taylor'smusic.
(04:00):
I am no exception, okay?
So he knew it was something Ihad always wanted to do, go see
Taylor perform, and it was goingto be like this super big
surprise.
Well, it turns out even thebigger surprise for me and my
future was COVID 19.
Which, her concert wascancelled, I still have never
gotten to see Taylor perform,and then my son had a stroke.
(04:23):
I would have much preferred theTaylor Swift surprise to the
surprise, your son is bleedingin his brain and has a rare
disease.
And well, those airline ticketswere long forgotten.
Until Kyle looked up the airfarecost on the website and saw we
had a credit when he logged in.
(04:44):
So I'm excited to announce thatAVM Alliance will be at the IPSO
conference and is super lookingforward to meeting all those
superhero doctors at theHospital for Sick Children in
Canada.
Now, if I can just figure outhotel money.
Let's move on.
With February being Rare DiseaseAwareness Month, today I want to
(05:04):
introduce everyone to Melanie.
Her son, Creed, was originallydiagnosed with a very rare
condition called porncephalywhile she was pregnant.
And this eventually progressedto a diagnosis of hydroencephaly
when she was 32 weeks.
Creed is missing the majority ofhis brain.
He essentially only has hisbrain stem and all The rest of
(05:27):
his brain is missing.
Doctors have deemed her childincompatible with life, but
Creed has defied the odds and isnow nine years old.
Melanie, thank you so much forjoining us.
Hi.
So tell us a little bit aboutyour journey and your son.
Melanie Oellig (05:44):
Originally, I got pregnant right when I turned
20 and our anatomy scan, theyjust found some abnormalities.
He had a heart murmur and thenthe front of his brain was
really squished together.
And there was a cyst on the leftside of his brain.
They were just concerned becausethey said it was usually like a
(06:04):
genetic abnormality.
They did an amniocentesis.
And everything came back normal,but that really only tests the
most common genetic mutations.
And when I went in at 22 weeks,he had had a stroke and 10
millimeters of his brain haddeteriorated.
They diagnosed him with poorencephaly originally, but he had
(06:24):
more strokes and more of hisbrain deteriorated.
And they ended up diagnosing himwith hydoencephaly.
And then they diagnosed him withhydrocephalus.
They just monitored him reallyclosely because his head was
retaining, you know, CSF and itwas growing so fast, a lot
faster than his body.
They pretty much said, you know,the prognosis is not very good
(06:46):
for kids that are born likethis.
They usually don't live verylong.
And then I went in at like, 38weeks for one of my weekly
ultrasounds and my ultrasoundtech went and got the doctor
because she was seeing what sheassumed were seizures on the
ultrasound and I'd mentioned itto the doctor because I was
like, it's almost like my wholestomach starts shaking and it's
(07:08):
really weird because it doesn'tfeel like when he has the
hiccups or anything like that.
And the doctor pretty much toldher, yeah, those are seizures.
We can't 100 percent confirm itbecause we can't do an EEG on a
baby.
He was like, but the repetitivemovements and the duration makes
me think that it's a seizure.
So they did a non stress testand he did not pass the non
(07:32):
stress test.
So they induced me that nightand told, you know, they pretty
much told me like, he's notgoing to live for more than just
a few hours.
Obviously, that's not true.
He's almost nine.
So I delivered him at 38 weeksand they took him to the NICU.
And he stayed there for likefour days and he was eating by
(07:53):
himself and doing everything thebabies are supposed to do.
So they pretty much handed methis kid and said, good luck.
They didn't tell me like who I'msupposed to follow up with or to
see these specialists.
They were just like, look, he'sgoing to die.
Like that's.
Wow.
Like, just take them home, lovethem while you have them.
So it was kind of scary becauseI was a first time mom and had
(08:15):
more strokes since then, but wedidn't know about his genetic
mutation until he was seven.
It pretty much just destroys allthe basement membranes in your
body.
And it causes all the vessels tobe extremely weak, which puts
them at a very high risk forstrokes and brain bleeds.
You can only treat the symptomsof gold syndrome.
You can try and control theblood pressure to lower their
(08:38):
risk of a stroke, not giveNSAIDs to lower the risk of a
brain
Raylene (08:43):
bleed.
One of the things that caught myattention that you said when you
were telling your story is thatCreed's shunt has failed a lot
of times.
And is that because he continuesto have brain bleeds?
It's
Melanie Oellig (08:54):
partially because of the brain bleeds
because the blood coagulates inthe shunt and then it blocks it.
The other part is because he hashad so many strokes and it's
deteriorated part of his brainmatter, there's just a lot of
brain matter floating aroundthat's not connected anymore and
it's in little pieces so ittends to clog the shunt.
(09:15):
And then because of therecurrent brain bleeds and
strokes, the protein count in aCSF is super high, and that
makes the CSF like super thick,and it can also cause issues
with like the shut draining.
Scans don't always show whatthey're supposed to, especially
with kids that have braindamage.
Raylene (09:33):
What is something that keeps coming up that you want
people to know about Creed oreven about medical moms?
Melanie Oellig (09:40):
I mean, just mostly There is a lot of
opinions about kids like my kidthat, you know, some people
don't believe that we should Domedical intervention or we
should give medications that weshould just put them on hospice
and let them pass But the wholething is is that they don't know
your child Like I know my childbetter than anybody else.
(10:04):
I'm his expert.
I'm with him Wolf 24 hours a dayfor seven years now.
I work night shift, but I No,everything about him and I
wouldn't do something to him andnot for him.
I'm not going to put him throughsomething that's going to
prolong his life.
That won't improve the qualityof life and that's the whole
(10:27):
thing.
You know, we chose.
Quality over quantity, as longas he's happy and he's
comfortable, we will do certainmedical interventions.
Listen to the mom or thecaregiver of someone like this
because they know them betterthan anybody.
I can't tell you how many timesI've bought Creden and been
(10:49):
like, I don't know what's wrong,but something's wrong.
Something's not right.
And his doctors have ran thetests that I asked them to run.
I'm in it.
Something's wrong, and that'swhat you need as a medical mom,
is people who listen to you anddon't make you feel like you're
crazy for saying, you know,something, I don't know what it
(11:10):
is, but something's wrong.
You second guess yourself.
You've been crazy because you'relooking at your kid and there's
only minimal changes to vitals,whatever, but you could feel it.
You have the gut intuition thatsomething is wrong, and you want
to get out of it.
And sometimes it takes months tofigure it out, but you just have
to follow.
Raylene (11:26):
Your intervention, you know what?
I think that's excellent advice.
I feel the very same way when wetook Kyler to the local
pediatrician here and I said,Hey, look, something is really
wrong.
Like, it's really wrong.
And they were like, no, no, hejust has a migraine.
We'll give him a shot.
Go take him and put him back tobed.
And like every fiber of my beingwas like, I don't think so.
(11:48):
This is not.
This is not right, but it'sreally hard.
A lot of times for I thinkparents and moms to second guess
themselves on whether, you know,am I crazy or is there really,
really something wrong becausedoctors are experts in a field
that we don't necessarily knowthat much about.
Melanie Oellig (12:06):
So I think there's definitely a balance.
People will accuse you of doctorshopping or whatever, but it's
why I research so hard when Ifind his doctor is because I
need people that are going to.
Stand behind me and be like,look, this is what we need.
And this is where we're going.
And if mom's not comfortablegoing home today, then they're
(12:26):
staying in the hospital.
Raylene (12:28):
I really appreciate you sharing your story and telling
us about Creed.
A lot of times I feel like yousay to us other medical moms,
what we're all thinking.
About things with with doctorsand other people and and I just
really appreciate your selfconfidence.
Melanie Oellig (12:45):
Oh, thank you That come with all of this
they're normal I am a greatcompartmentalist.
I compartmentalize everythingand shove it away and in its
little box and pretend like it'snot there until I eventually
explode.
And then I cry for like threedays and then I shove it all
(13:06):
back in that box.
Because as his mom, I would loveto keep him with me forever.
But as a medical professional, Iknow that I can't let him
suffer, so I, I can't be his momwhen we're in situations where
I'm choosing between life ordeath because I can't let my
(13:28):
emotions get involved in thosemedical decisions.
Not everybody is great atseparating the two, but I just
look at it as I would rather himbe comfortable.
And have a quality of life, thenbe suffering and prolong his
life.
(13:49):
And with that, and knowing thatmy son is terminal and he's
gonna die, there's just a lot ofgrief.
And ambiguous grief is reallyweird because you're grieving
somebody who's still alive andIt's not always just when your
kid is terminal, you imaginethis whole life for them and
them, you know, growing up andgraduating and getting married
(14:11):
and having babies and livingthis long happy life.
And when your kid has a strokeor a brain injury, even just
like severe autism or somethinglike that, like that whole life
that you imagine just getsripped away from you and The
grief of it is real.
Like there are days where Iliterally even nine years, you
(14:35):
know, into this that I just cryand I can't, my heart just can't
take it because I can'tunderstand why it happened to my
kid.
And I, Grieve, you know, hisfirst words, his first steps.
I'm never going to see him getmarried.
I'm never going to see him havekids.
I don't get to see him grow up.
(14:56):
Like I own a plot for him.
I have a whole funeral plannedout.
I know he's going to die.
And the grief from that somedays is.
And I feel like I'm drowning andmy husband has more than one
time had to pick me up off theshower floor because I just
can't I don't have it in meanymore to get off the floor and
(15:18):
I get so tired of fighting foreverything for him.
So when those days come, I haveto give myself grace.
I have to let myself.
Be okay with not being okay.
And for a long time, that wasthe hardest thing because
everybody was just like, bethankful he's alive, be thankful
(15:38):
he's this.
And I'm like, I didn't say Iwasn't thankful he was alive.
I said, I was tired.
Like there's a difference.
The immense amount of stress onmoms that have kids like this
and learning how to deal withthe grief and everything else,
you just have to be gentlebecause it's not easy to be in
this position.
(15:58):
Watching everybody else's lifemove on around you, and you just
feel like you're stuck becauseyou're waiting to lose your
child.
It's exhausting in and ofitself, and you know, you just
have to build a tribe for themost part.
I mean, my tribe is nurses anddoctors and, you know,
(16:21):
therapists and people that arearound us every day.
They understand, you know, andthen I have a few friends that
have kids that are similar toCreed and some of their kids
have already passed and, youknow, I'm very close with them
and those people, I guess, makeit a little bit easier to get
(16:42):
through the days where I'm notokay, because they don't expect
me to pretend like I'm okay, andthe ones that have already lost
their kids, Understand theambiguous grief and they're
there to help me through thatprocess.
And you know, if you're married,that's another big thing.
(17:05):
The stress on a marriage, likethe divorce rate for parents of
special needs kids, not even,you know, medically fragile or
terminally ill, is like 75%.
Because of the stress that itputs on your marriage and my
husband's learned to tune intome He'll walk in and he's like
you're not okay, you know, likeyou're not you're physically
(17:26):
here, but you're not mentallyhere You're stuck in your head,
but it took a lot of years toget there It took until about
four years ago when I finallyStarted saying, Hey, I'm not
okay for him to realize thesigns of me pulling away.
And so you just have tocommunicate with everybody, even
if not everybody can understand,because I've had plenty of
(17:47):
people tell me that I'm justbeing dramatic or I'm attention
seeking.
And I'm like, no, I'm expressingmy emotions.
And I do express a lot of themon social media, because at 20
years old, I had a kid that theytold me was going to die and
he's now nine.
And I had to learn how tonavigate the medical system.
And learn how to deal with myemotions and everything else on
(18:09):
my own at 20 and all of myfriends and everybody else is
having perfectly healthy babiesand I'm like, you know, I don't
know where to go with this.
I don't know anybody like me.
So I share all of that so thatsomeone that does have a kid
like me doesn't feel so alone.
Raylene (18:24):
And if somebody wanted to follow you and follow your
story, what's the best way forthem to do that?
Melanie Oellig (18:29):
Most of what I share is on Facebook.
I think it's a blog, but it'scalled Creed's Journey.
Raylene (18:35):
I will include the link in the comments and I would say
I think there just comes a pointwhen everybody around you
expects you to be okay ordoesn't want to hear or see that
you're not and I just can'tpretend that everything's just
fine for the general communityanymore.
Well, thank you so very much forall your advice and information
(18:55):
and sharing your story today.
Thank you for having me.
All the best to you and Creedand we'll continue to follow you
on Facebook on Creed's Journey.
Thank you.
The focus of this month's Thingsto Think About is based on the
children's book, When Meeting aMiracle, written by Josh
Coleman.
Josh's daughter, Fallon, wasborn with a very rare genetic
disorder.
(19:16):
She was given a 5 percent chanceof surviving delivery and even
lower odds post delivery.
As a family, he and his wifespent 18 months in the hospital,
a year of which was spent in adifferent state.
This book was written to bringcomfort to families that are up
against tremendous odds and forthose parents experiencing
(19:38):
extraordinary pain with the lossof a child.
His narrative serves as areminder that every child is a
miracle.
For those whose time with theirmiracle is brief, Josh reminds
us the opportunity to meet thatmiracle is a beacon of light in
the darkness.
Regardless of where you findyourself in life, this book
(19:59):
underscores the importance ofpersevering because we all have
a purpose.
A heartfelt thank you to Joshfor this impactful reminder.
And as always, if you havequestions, have a topic you
would like to hear about, don'tbe shy.
Share it in the comments and letus know.
(20:20):
And if you liked what you heardtoday, please go online and rate
this podcast.
Remember, you're never walkingthis journey alone.
Take care, y'all.
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