Fetal Surgery for Spina Bifida

Fetal Surgery for Spina Bifida

>>When a mom decides to have an operation
on her unborn baby, nothing could be more vulnerable to a person than at that moment. I remember the first time I did an operation
before the baby was born, and I left the room and I immediately said to no one, but I said
it out loud, we should not be able to do that. And then when that baby was born, I felt pride. I know I shouldn’t, but it feels really good
to have a positive impact on the baby. Dr. Adzick always says, when you
save a baby, you save a lifetime.>>In the operating room at the time of the
fetal spina bifida closure, it is a very well-choreographed dance that happens. There are pediatric surgeons; there’s a neurosurgeon;
there’s maternal fetal medicine specialist; there is a pediatric cardiologist; there’s
anesthesia, anesthesia techs, OR nurses, OR techs, circulating nurses;
it’s a very large team. Spina bifida is a birth defect in which the
spine and the vertebrae do not form correctly very early in the pregnancy.>>As an early embryo, four to six weeks,
this tube’s suppose to form and close, all the tissue to protect the spinal cord. And in spina bifida, for reasons we don’t really
completely understand, that closure doesn’t occur. occur.>>Your spinal cord acts as your information
superhighway between your brain and your extremities, and it allows your brain to tell your arms
and your legs what to do and to maintain control over your bladder and your bowel functions.>>Because the spinal cord is outside the
body and it’s exposed to the environment, over time there’s irreversible
damage to the spinal cord.>>When couples are faced with a diagnosis
of spina bifida in their baby, the two main treatment options are: fetal surgery while
the baby is still in mother’s womb or surgery on the baby right after birth. What’s really important to understand is that
the fetus surgery is not a cure. The goal for the fetal surgery is that maybe
we can minimize or reduce some of the long-term effects of spina bifida. For kids who have spina bifida, the long-term
issues that we worry about are things like difficulty controlling their bladder
and controlling their bowel. We worry about them not being able to walk
on their own; they may need to use a wheelchair. Kids are also at risk for developing hydrocephalus,
or water on the brain is what some people call it, and so they may need to have a shunt
placed in order to keep the pressure down in their head. Hopefully we’ll improve the likelihood that
the baby can walk longer term. Hindbrain herniation is another one of those
big scary terms that we hope we can reverse with the prenatal surgery. Hindbrain herniation is a common finding for
babies who have spina bifida, where the posterior part of the brain starts to come down into
the top of the spinal canal.>>The first hospital that we were at offered
to do fetal surgery for us. And we asked them how many times they have done it, and they
said we would be the first, and that just for us, was not an option. We just felt that our daughter, we wanted
her to have the absolute best care possible even though she hadn’t been born yet, but
we just knew we had to come here, just there was no other option for us.>>Our team at CHOP, we’re very fortunate
to have done a lot of the groundwork experimentally for spina bifida, to have done
some of the first cases. And because of our expertise, there’s no other
center in the galaxy that’s done more fetal surgery for spina bifida than we have at CHOP.>>There are layers and layers and layers
of expertise that we drop on, on a daily basis. It really is a giant team specialized with
various backgrounds and education with a singular purpose — best outcome for mom and baby.>>The doctors during the consultation let
us know what surgery entailed. They let us know they would be doing an incision
across my belly as if it were a c-section, and then they would be opening up my uterus
and they were going to use an ultrasound to find her, to make sure just her back came
up out into the world. It’s just mind blowing that it’s possible. It’s just mind blowing.>>All this team has to work sort of seamlessly;
have to work at some level without communicating with each other, know what each member’s doing. And so it takes a lot of teamwork. And that teamwork’s built over
years of working together. So the first thing we close is the dura, that’s
the covering to your brain and your spine. Then we close the muscle;
then we close the skin. By closing those layers over the top, we’re
protecting the spinal cord from any ongoing damage. So we’re hoping that we can have an impact
on those nerves and keep as many nerves as we can functioning so the baby has more function.>>So, typically after having had fetal surgery,
moms remain on bed rest in the hospital for about four days. And then after they’re discharged from the
hospital, they’re discharged with a wheelchair and they have very minimal activity
for about the first three to four weeks. And if everything looks good on a follow-up
exam, we slowly allow her to increase her activity level. After fetal surgery, moms are seen every week
for both a prenatal visit and an ultrasound. We plan for mom to have a
cesarean delivery at 37 weeks.>>The Garbose Family Special Delivery Unit
opened June 8th, 2008, and it was the first birthing unit dedicated exclusively to healthy
mothers whose unborn baby has a birth defect.>>I think it’s easier to deal with stuff
that you know than you don’t know, and this whole time has been a very unknown. Unknown whether we were going to make it to
37 weeks, unknown what … how he’s going to come out; how he’s going to do;
how I would do, you know. But at least after today,
it will all be on the table. So it’ll be so much easier to deal with. I’m excited. I’m excited to no longer have to be
in a wheelchair and on bed rest. I can’t wait to go walking again.>>So if mom opts to deliver here in the Special
Delivery Unit, immediately after birth, the baby is evaluated by the neonatal surgical
team, stabilized, and then immediately goes to the Neonatal Intensive Care Unit and starts
down a very involved care pathway that includes: neurosurgery, surgery, urology, and specific
imaging so that we can best assess the outcomes from the fetal surgery and make a
detailed care plan going forward.>>Some of our families are relocating from
far away, across the country, maybe from around the world. We surround the family with layers and layers
of support, so we support them with psychosocial services, with nursing support, and they may
not realize the effect that the diagnosis and the treatments and relocating to
our center may have on the entire family. There are issues with anxiety, there maybe
marital issues, and we address those with our psychosocial team.>>Miah still has daily medical care
that she has to have done. She has no function of her bowel or bladder. She gets therapy four days a week, so some
days are definitely harder than other days. She has great function right
now and can run around and play.>>We forget she has spina bifida some days,
but you know, we still worry about her bowel and bladder, going to school and trying to
regulate that and combat that when she’s at school. We’re blessed where she is right now. If that’s all we have to deal with,
we got out lucky.>>It was scary for me at first,
but now it’s just so normal for us. Miah just doesn’t know any different and I
think, I think sometimes as parents we stress more over what their life is going to possibly
be like than how they actually perceive it.>>So you might ask why come to the Center
for Fetal Diagnosis and Treatment at CHOP? The reason is that as a patient, as a mother
carrying a baby with a birth defect, you want the best information from an incredibly caring team;
you want to know all the option, and you want the best possible care. That’s what we provide.>>Today, Miah is an incredible,
happy little girl. She is able to be a typical child. She’s able to play. She just started gymnastics, and she’s going
to be starting kindergarten in the fall, and she’s just incredible.

6 Replies to “Fetal Surgery for Spina Bifida”

  1. My first baby was born with Bi-lateral clubfeet via genetics, as it ran in my family, no spina bifida. We had amazing surgeons that corrected his feet over a few years. He doesn't have full range of motion in his left foot but he gets around well enough, even with arthritis in both ankles. Today, he is a twenty-two year old that has an active job and uses supports for this feet, as well as ankles.

  2. I'm a medical undergraduate from a unprivileged country …I saw a spina bifida case today born vaginallly and premature… Patient didn't get any checkup done before this..no USG..nothing …so those who get it diagnosed and treated at such hospitals should feel lucky

  3. I have spina bifida and I know how scared these parents are. Back when I was born the doctors told my family not to expect me to make it… Well I'm here 33 years later!

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