June 19, 2024 • 17 mins
On this episode of Our American Stories, Karla Duerson shares the story of what it was like being pregnant with and giving birth to her daughter Wylie.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:10):
This is Lee Habib and this is our American Stories
and we tell stories about everything here on this show,
including your story. Send them to our American Stories dot com.
We love to tell listeners stories and this is the
only show in the country where America is the star,
with the American people of the star. By the way,
if you'd like to support all that we're doing here,
(00:31):
it is a five oh one c three a nonprofit,
and you can support us by going to our American
Stories dot com. Give a little, give a lots, tax deductible,
do your part and it can share what we're doing
with friends and with neighbors, because there are so few
things we can share with each other that's content. And
now we have Carla Dowson on to share a story
(00:52):
with us, and she is a student of one of
our regular contributors, author Leslie Laylan Fields. Carla is sharing
with us this story of her daughter Wiley. Here is Carla.
Speaker 2 (01:09):
How do I begin a story that seems to have
begun long before I was born? How can I go
back far enough to show how all the tributaries ran
along to cause this river that is my life? There
is not a way I can see now except to
begin somewhere and trust that those small streams will reveal
(01:32):
themselves even in the flow of mightier water. Kori at plexusists,
kroiet plexus, cysts. I turned these alien words over in
my mind and tried them in my mouth. Was I
saying it right? Gavin and I were in the subaru
and trying to decide if we could continue with our plan.
(01:56):
It says here that most of the time they just resolve.
They don't cause any harm, it seems. I murmured these
words to him as I scrolled through several health articles
describing these intruders found on our unborn baby's brain in
an anatomy scan. Should we still get the balloon? Gavin
(02:17):
wondered aloud. We should? I resolved. He pulled into the
dollar tree. He went in and gave the employee the
sealed envelope the sonographer had prepared for our gender reveal surprise,
and the box to hide either a blue or pink balloon.
In the meantime, I called my best friend from the
(02:38):
passenger seat in the parking lot, Elizabeth. They found cysts
on the baby's brain and maybe a problem with the heart.
I'm so sorry, she breathed. I knew she was. There
are no platitudes and cliches familiar with suffering. She is
(03:02):
full of empathy and love. We cried and prayed the
rest of the short way home. With the balloon in
the box in the back of the car, we stopped
in the driveway. This would not be the only time
we would wonder how to face our family of five
children with news we did not understand, let alone know
(03:25):
how to bear. We took deep breaths and went inside,
knowing that in the midst of the painful mystery of
what had just happened, there was apparent joy. We gathered
in our living room and decided to video the momentous occasion.
Our eldest manchild hovered over his younger brother and three
(03:47):
younger sisters, who almost all thought the balloon would be blue.
The eldest sister decided to go with pink. I'm going
to say it's a girl because I want you to know, baby,
that if you're a girl, I believe in you. She
announced this to the camera. We sliced the box open,
(04:09):
and we all gasped, laughed, and marveled at the pink
balloon that floated up to the ceiling. It did seem
to take the heaviness of the what ifs off our shoulders.
Everything felt lighter in the wonder of our baby girl,
Margaret Wiley. From the beginning, she has been full of surprises.
(04:31):
Her story barely feels like it's mine too. Yet I
was there. I remember the nausea. I remember the faces
in mind, comforting, supporting, helping. I remember the room and
the thoughts and the unfolding. I was there. We were
doing this together, this being born. After the anatomy scan
(04:56):
with the Croyd plexus cysts on the brain and the
possible heart ABNERM, we were scheduled to see a high
risk obstetrician. I was expecting it to be nothing, something
easily explained away. She is just fine. I imagine the
doctor saying, he said, nothing of the kind. You see
(05:17):
her heart here. It does not have a wall where
one should be. I felt like he was talking so fast,
and my heartbeat joined his rapid cadence. He could see
the cysts, but their presence was more evidence for his
final evaluation, not necessarily a problem in themselves. I am
(05:37):
quite certain that your daughter has Down syndrome. My heart dropped.
I asked him to say it all again, her growth,
the cysts, the heart defect. It all added up in
his estimation to a genetic disorder. Then came the offers
of how to move forward or not move forward with
(05:59):
the pregnantgnancy. We can arrange for any or all of
it right here in the office. We asked for a
moment reeling. I dropped my legs off the side of
the exam table toward Gavin. We knew that advanced maternal
age carried risks, and we also knew that we did
(06:19):
not want to end this life that had begun. We
explained that conviction for the first of many times when
the doctor re entered the room. We also opted for
a blood test in which they could use a sample
of mind to find Wiley's genetic information. It was not diagnostic,
like an amniocentesis would be, but for the time being,
(06:42):
it felt safer to us. We did not realize that safety,
as we knew it would no longer be an option anymore.
Speaker 1 (06:53):
And you're listening to Carla Doerson, and you're hearing her
tell the story of her pregnancy in the news that
she learned well that no parent wants to hear that
her daughter was going to be born almost for sure
with Down syndrome. When we come back. More of Carla
Dowson's story here on our American Stories. Folks, if you
(07:30):
love the great American stories we tell and love America
like we do, we're asking you to become a part
of the Our American Stories family. If you agree that
America is a good and great country, please make a donation.
A monthly gift of seventeen dollars and seventy six cents
is fast becoming a favorite option for supporters.
Speaker 2 (07:48):
Go to our.
Speaker 1 (07:49):
American Stories dot com now and go to the donate
button and help us keep the great American stories coming.
That's our Americanstories dot com. And we continue with our
(08:11):
American Stories. And we've been listening to Carla Doers and
share the story of her daughter Wiley. While pregnant with her,
Carla and her husband Gavin found out that there were
cysts on Wiley's brain and holes in her heart, all
signs of Down syndrome. We return to Carla.
Speaker 2 (08:33):
The next step was to have a heart scan with
a pediatric cardiologist. What other questions do you have? He asked,
So if you repair her heart, she could run around
and play Ball. Absolutely, we can repair children's hearts and
they can have the potential to live a happy, normal life.
(08:57):
This amazing doctor, with the assistance of skilled sonographers, examined
our little Wiley's tiny heart and found that she had
a large hole between her ventricles, a small one between
the chambers of her atrium, and a very leaky valve.
He spoke clearly and candidly about human limits. We did
(09:19):
not yet know what her genetic condition might be, but
looking at her heart, he conjectured that she could be
born at our local children's hospital and would not need
emergency surgery for her heart. We left the appointment marveling
at the technology and knowledge that could assist the tiniest
of people. On a Tuesday morning following I answered the
(09:43):
call from the high risk obstetrician. I'm sorry to tell
you that the test has different results than expected. I
thought it was tryst to me twenty one, but the
test came back with a strong likelihood of tryst to
me eighteen frozen. I knew I knew what that meant.
(10:05):
In researching kroud plexusysts, I had come across information about
trysome eighteen Edward syndrome. The next most common after trysomy
twenty one down syndrome, and Edward's prognosis is incredibly bleak.
Most people choose not to continue the pregnancy. Of those
(10:27):
that do continue, only fifty percent are born living. Of
those who do live, ninety to ninety five percent pass
away before their first birthdays. I thought our baby was
going to have the love chromosome, not the death chromosome.
I grieved and we prayed. Wiley tipped her cards a
(10:50):
few times. She shot up a clenched fist in an ultrasound,
which is a common trysomy eighteen trait. She grew, but
very slowly, another telltale sign her brain was abnormal. Other
moms on this journey described the same experience. I had
the strangeness of carrying a bustling, busy baby on the
(11:14):
inside who has given almost zero chance of making it
on the outside. The day came when our doctor told
us it was time for new cuisine and fresh air.
The placenta, also affected by the genetic disorder, was not
serving her well anymore. For the first time in my
experience of motherhood, I chose between a Monday and Tuesday
(11:37):
for an induction. The struggle was real preparing for her birth,
I could feel the temptation to pull away from my daughter.
The idea of having to let her go was so painful.
I wanted to protect my heart. I prepared myself for
the worst in hopes of getting over the loss more quickly.
(12:00):
But in the midst of this emotional removal, a friend
reminded me that Wiley needed me. Like many other times
in which something felt impossible, forgiveness, letting go, choosing mercy
over judgment, I felt God helping me open my heart
(12:20):
all the way to my precious girl. I realized either way,
whether alive on earth or in heaven, I would still
have the chance to hold her. This encounter became my
new focus. I knew I would never receive a gift
of which I was more afraid. On the scheduled day,
(12:42):
Wiley was born, but not into my arms. She was
born into the hands of doctors who pulled her from
my body and onto tiny beds with machines. As Gavin
and I held Haines, we didn't know if she was
coming or leaving. Goodbye was easier to imagine than Hello.
(13:09):
Yet Gavin went to her, held her body and announced
she's breathing. Car She's breathing. I reeled and it began
receiving Wiley. A few long hours later, on May eighth,
(13:33):
she was placed into my arms. I did not know
how to hold her. She had tubes and cords and
leads springing from her. In my disbelief, I cradled my
daughter gently. She was born weighing four pounds and eight ounces.
I trembled beneath her weight. She was like the break
(13:58):
of day. A constant prayer flowed silently from my heart.
How Lord, how do I hold her? With her tiny
body and her determination, Wiley brought with her a deep
sense of the present. I dared not leave it. Along
(14:19):
with that, she attracted hands, So many hands, family friends, nurses, technicians, doctors,
social workers, dietitians, volunteers, clerks, neighbors, therapists, so many people
to hold us. We would have fallen, Gavin Wiley, our
(14:44):
other children, me, We would have crumbled if it weren't
for the grip of people who carried our burdens and
met our needs through those hands and prayers. Wiley endured
three holes in her her lungs, an open heart surgery, arrhythmias,
(15:05):
a parcardial effusion, pulmonary hypertension, seizures RSV, and numerous infections
with intubations. We wondered more than once if she was
leaving this world. On one occasion, I looked upon my
daughter with such sorrow and cried out to God to
(15:26):
know how to endure, witnessing her suffering, but slowly she
was gaining with gray awe, I witnessed my daughter choosing us,
choosing to stay. Now these days we gather what she
has sown. She is thriving, She is still the gift
(15:47):
that inspires me. She still attracts a crowd of helpers
and admirers. She still takes her breath, but in a
whole different way. Tries to be eighteen has become a
welcome death sentence. We are glad that our small, comfortable
life has died. We were glad to put to death
(16:11):
selfishness in our family. Wiley's tries to me eighteen diagnosis
has been a death to living with a false sense
of control and misplaced trust. Receiving her just as she
is has been a gift of a new kind of
life with God and an amazing time of living with
(16:33):
her in the here and now. In light of time's uncertainty,
heaven and eternity have never seemed sweeter or more real.
I have a song for her. I change the words
to Adelweiss and sing them over her. The Adelweis flower
(16:53):
grows in the high altitude of the Alps and is
a symbol for bravery, courage, and love. How fitting for
our mighty warrior. Wiley Girl, Wiley Girl. Every morning you
greet me soft and light, sweet and bright, you look
(17:16):
happy to meet me. Blossoms of love. Will you bloom
and grow, bloom and grow forever? Wiley Girl, Wiley Girl.
Bless my daughter.
Speaker 1 (17:32):
Forever and a special thanks to Carla Dowson for sharing
her story. The story of Carla Dowson and her husband
and her baby girl Wiley here on our American Stories
This is Lee Habib and this is our American Stories
and we tell stories about everything here on this show,
including your story. Send them to our American Stories dot com.
We love to tell listeners stories and this is the
only show in the country where America is the star,
with the American people of the star. By the way,
if you'd like to support all that we're doing here,
(00:31):
it is a five oh one c three a nonprofit,
and you can support us by going to our American
Stories dot com. Give a little, give a lots, tax deductible,
do your part and it can share what we're doing
with friends and with neighbors, because there are so few
things we can share with each other that's content. And
now we have Carla Dowson on to share a story
(00:52):
with us, and she is a student of one of
our regular contributors, author Leslie Laylan Fields. Carla is sharing
with us this story of her daughter Wiley. Here is Carla.
Speaker 2 (01:09):
How do I begin a story that seems to have
begun long before I was born? How can I go
back far enough to show how all the tributaries ran
along to cause this river that is my life? There
is not a way I can see now except to
begin somewhere and trust that those small streams will reveal
(01:32):
themselves even in the flow of mightier water. Kori at plexusists,
kroiet plexus, cysts. I turned these alien words over in
my mind and tried them in my mouth. Was I
saying it right? Gavin and I were in the subaru
and trying to decide if we could continue with our plan.
(01:56):
It says here that most of the time they just resolve.
They don't cause any harm, it seems. I murmured these
words to him as I scrolled through several health articles
describing these intruders found on our unborn baby's brain in
an anatomy scan. Should we still get the balloon? Gavin
(02:17):
wondered aloud. We should? I resolved. He pulled into the
dollar tree. He went in and gave the employee the
sealed envelope the sonographer had prepared for our gender reveal surprise,
and the box to hide either a blue or pink balloon.
In the meantime, I called my best friend from the
(02:38):
passenger seat in the parking lot, Elizabeth. They found cysts
on the baby's brain and maybe a problem with the heart.
I'm so sorry, she breathed. I knew she was. There
are no platitudes and cliches familiar with suffering. She is
(03:02):
full of empathy and love. We cried and prayed the
rest of the short way home. With the balloon in
the box in the back of the car, we stopped
in the driveway. This would not be the only time
we would wonder how to face our family of five
children with news we did not understand, let alone know
(03:25):
how to bear. We took deep breaths and went inside,
knowing that in the midst of the painful mystery of
what had just happened, there was apparent joy. We gathered
in our living room and decided to video the momentous occasion.
Our eldest manchild hovered over his younger brother and three
(03:47):
younger sisters, who almost all thought the balloon would be blue.
The eldest sister decided to go with pink. I'm going
to say it's a girl because I want you to know, baby,
that if you're a girl, I believe in you. She
announced this to the camera. We sliced the box open,
(04:09):
and we all gasped, laughed, and marveled at the pink
balloon that floated up to the ceiling. It did seem
to take the heaviness of the what ifs off our shoulders.
Everything felt lighter in the wonder of our baby girl,
Margaret Wiley. From the beginning, she has been full of surprises.
(04:31):
Her story barely feels like it's mine too. Yet I
was there. I remember the nausea. I remember the faces
in mind, comforting, supporting, helping. I remember the room and
the thoughts and the unfolding. I was there. We were
doing this together, this being born. After the anatomy scan
(04:56):
with the Croyd plexus cysts on the brain and the
possible heart ABNERM, we were scheduled to see a high
risk obstetrician. I was expecting it to be nothing, something
easily explained away. She is just fine. I imagine the
doctor saying, he said, nothing of the kind. You see
(05:17):
her heart here. It does not have a wall where
one should be. I felt like he was talking so fast,
and my heartbeat joined his rapid cadence. He could see
the cysts, but their presence was more evidence for his
final evaluation, not necessarily a problem in themselves. I am
(05:37):
quite certain that your daughter has Down syndrome. My heart dropped.
I asked him to say it all again, her growth,
the cysts, the heart defect. It all added up in
his estimation to a genetic disorder. Then came the offers
of how to move forward or not move forward with
(05:59):
the pregnantgnancy. We can arrange for any or all of
it right here in the office. We asked for a
moment reeling. I dropped my legs off the side of
the exam table toward Gavin. We knew that advanced maternal
age carried risks, and we also knew that we did
(06:19):
not want to end this life that had begun. We
explained that conviction for the first of many times when
the doctor re entered the room. We also opted for
a blood test in which they could use a sample
of mind to find Wiley's genetic information. It was not diagnostic,
like an amniocentesis would be, but for the time being,
(06:42):
it felt safer to us. We did not realize that safety,
as we knew it would no longer be an option anymore.
Speaker 1 (06:53):
And you're listening to Carla Doerson, and you're hearing her
tell the story of her pregnancy in the news that
she learned well that no parent wants to hear that
her daughter was going to be born almost for sure
with Down syndrome. When we come back. More of Carla
Dowson's story here on our American Stories. Folks, if you
(07:30):
love the great American stories we tell and love America
like we do, we're asking you to become a part
of the Our American Stories family. If you agree that
America is a good and great country, please make a donation.
A monthly gift of seventeen dollars and seventy six cents
is fast becoming a favorite option for supporters.
Speaker 2 (07:48):
Go to our.
Speaker 1 (07:49):
American Stories dot com now and go to the donate
button and help us keep the great American stories coming.
That's our Americanstories dot com. And we continue with our
(08:11):
American Stories. And we've been listening to Carla Doers and
share the story of her daughter Wiley. While pregnant with her,
Carla and her husband Gavin found out that there were
cysts on Wiley's brain and holes in her heart, all
signs of Down syndrome. We return to Carla.
Speaker 2 (08:33):
The next step was to have a heart scan with
a pediatric cardiologist. What other questions do you have? He asked,
So if you repair her heart, she could run around
and play Ball. Absolutely, we can repair children's hearts and
they can have the potential to live a happy, normal life.
(08:57):
This amazing doctor, with the assistance of skilled sonographers, examined
our little Wiley's tiny heart and found that she had
a large hole between her ventricles, a small one between
the chambers of her atrium, and a very leaky valve.
He spoke clearly and candidly about human limits. We did
(09:19):
not yet know what her genetic condition might be, but
looking at her heart, he conjectured that she could be
born at our local children's hospital and would not need
emergency surgery for her heart. We left the appointment marveling
at the technology and knowledge that could assist the tiniest
of people. On a Tuesday morning following I answered the
(09:43):
call from the high risk obstetrician. I'm sorry to tell
you that the test has different results than expected. I
thought it was tryst to me twenty one, but the
test came back with a strong likelihood of tryst to
me eighteen frozen. I knew I knew what that meant.
(10:05):
In researching kroud plexusysts, I had come across information about
trysome eighteen Edward syndrome. The next most common after trysomy
twenty one down syndrome, and Edward's prognosis is incredibly bleak.
Most people choose not to continue the pregnancy. Of those
(10:27):
that do continue, only fifty percent are born living. Of
those who do live, ninety to ninety five percent pass
away before their first birthdays. I thought our baby was
going to have the love chromosome, not the death chromosome.
I grieved and we prayed. Wiley tipped her cards a
(10:50):
few times. She shot up a clenched fist in an ultrasound,
which is a common trysomy eighteen trait. She grew, but
very slowly, another telltale sign her brain was abnormal. Other
moms on this journey described the same experience. I had
the strangeness of carrying a bustling, busy baby on the
(11:14):
inside who has given almost zero chance of making it
on the outside. The day came when our doctor told
us it was time for new cuisine and fresh air.
The placenta, also affected by the genetic disorder, was not
serving her well anymore. For the first time in my
experience of motherhood, I chose between a Monday and Tuesday
(11:37):
for an induction. The struggle was real preparing for her birth,
I could feel the temptation to pull away from my daughter.
The idea of having to let her go was so painful.
I wanted to protect my heart. I prepared myself for
the worst in hopes of getting over the loss more quickly.
(12:00):
But in the midst of this emotional removal, a friend
reminded me that Wiley needed me. Like many other times
in which something felt impossible, forgiveness, letting go, choosing mercy
over judgment, I felt God helping me open my heart
(12:20):
all the way to my precious girl. I realized either way,
whether alive on earth or in heaven, I would still
have the chance to hold her. This encounter became my
new focus. I knew I would never receive a gift
of which I was more afraid. On the scheduled day,
(12:42):
Wiley was born, but not into my arms. She was
born into the hands of doctors who pulled her from
my body and onto tiny beds with machines. As Gavin
and I held Haines, we didn't know if she was
coming or leaving. Goodbye was easier to imagine than Hello.
(13:09):
Yet Gavin went to her, held her body and announced
she's breathing. Car She's breathing. I reeled and it began
receiving Wiley. A few long hours later, on May eighth,
(13:33):
she was placed into my arms. I did not know
how to hold her. She had tubes and cords and
leads springing from her. In my disbelief, I cradled my
daughter gently. She was born weighing four pounds and eight ounces.
I trembled beneath her weight. She was like the break
(13:58):
of day. A constant prayer flowed silently from my heart.
How Lord, how do I hold her? With her tiny
body and her determination, Wiley brought with her a deep
sense of the present. I dared not leave it. Along
(14:19):
with that, she attracted hands, So many hands, family friends, nurses, technicians, doctors,
social workers, dietitians, volunteers, clerks, neighbors, therapists, so many people
to hold us. We would have fallen, Gavin Wiley, our
(14:44):
other children, me, We would have crumbled if it weren't
for the grip of people who carried our burdens and
met our needs through those hands and prayers. Wiley endured
three holes in her her lungs, an open heart surgery, arrhythmias,
(15:05):
a parcardial effusion, pulmonary hypertension, seizures RSV, and numerous infections
with intubations. We wondered more than once if she was
leaving this world. On one occasion, I looked upon my
daughter with such sorrow and cried out to God to
(15:26):
know how to endure, witnessing her suffering, but slowly she
was gaining with gray awe, I witnessed my daughter choosing us,
choosing to stay. Now these days we gather what she
has sown. She is thriving, She is still the gift
(15:47):
that inspires me. She still attracts a crowd of helpers
and admirers. She still takes her breath, but in a
whole different way. Tries to be eighteen has become a
welcome death sentence. We are glad that our small, comfortable
life has died. We were glad to put to death
(16:11):
selfishness in our family. Wiley's tries to me eighteen diagnosis
has been a death to living with a false sense
of control and misplaced trust. Receiving her just as she
is has been a gift of a new kind of
life with God and an amazing time of living with
(16:33):
her in the here and now. In light of time's uncertainty,
heaven and eternity have never seemed sweeter or more real.
I have a song for her. I change the words
to Adelweiss and sing them over her. The Adelweis flower
(16:53):
grows in the high altitude of the Alps and is
a symbol for bravery, courage, and love. How fitting for
our mighty warrior. Wiley Girl, Wiley Girl. Every morning you
greet me soft and light, sweet and bright, you look
(17:16):
happy to meet me. Blossoms of love. Will you bloom
and grow, bloom and grow forever? Wiley Girl, Wiley Girl.
Bless my daughter.
Speaker 1 (17:32):
Forever and a special thanks to Carla Dowson for sharing
her story. The story of Carla Dowson and her husband
and her baby girl Wiley here on our American Stories
Host
Lee Habeeb
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