May 14 is a special day in our home- it’s the anniversary of our daughter’s spina bifida fetal surgery, which we lovingly call her “Miracle Day.” I was excited to share a little about our special day and had even started a blog post about it.
Then last Thursday night I got several texts…
”Erin! Fetal surgery is on Grey’s tonight!”
Me: “Hmmm…I should check this out to see how they’ll mess it up!”
And bam. Of course they messed it up (facepalm).
First, what is spina bifida?
It is a birth defect that occurs within the first 21 days of a woman’s pregnancy. The spine and back do not close and are open. The nerves that are exposed are then damaged by the amniotic fluid. Doctors and scientists agree that the causes of spina bifida are multifactorial. Most SB Mama’s I know did everything “right,” including taking our prenatals and folic acid. Spina bifida causes some paralysis, bladder and bowel issues, hydrocephalus, and Arnold Chiari malformation. Kids with spina bifida are all different- some can have the “SB works” and some can have very few issues. No two people with SB are alike!
Here are the top 3 misconceptions and falsehoods around fetal surgery for spina bifida:
1) It’s a cure.
No. No, it’s not a cure. It’s simply another option for repairing a baby’s back. There are two types of repairs: pre-natal and post-natal. There are sometimes benefits for having a baby’s back repaired before birth (see MOMS trial for official results): less likely to need a shunt, Chiari malformation can reverse, and some improved function in legs.
2) It’s an option for everyone.
Grey’s made it seem like this was a no brainer and everyone should do it. But that’s not how it works! First of all fetal surgery is limited to a few centers around the country. To be able to have fetal surgery, Livy and I went through two days of evaluations to see if we would qualify. We had a fetal MRI, had to go through a psych eval, had to go to a financial meeting to discuss that insurance may not pay, and listened as specialists told us everything that could possibly go wrong. I had to be healthy with a BMI under a certain number. Livy could not have any other diagnosis, her brain ventricles had to be under a certain number, and her SB lesion was taken into account. There is a very small window in which you can have the surgery- before 25 weeks gestation. Most people do not even know about their child’s diagnosis until 18-22 weeks gestation at the anatomy scan. On Grey’s they went to her home to talk the mom into the surgery. That part made my mouth drop open! Most SB fetal surgery moms experience the opposite and feel like everyone is trying to talk them out of the surgery! Some moms opt out after qualifying because there are serious risks for the baby (preterm birth and death included).
3) It’s an easy surgery.
Bahaha. That’s beyond laughable! It’s a very serious surgery. It was a four hour surgery with a team of doctors for me and a team of doctors for Livy. The easiest way to explain it is by saying they performed a c-section, but the baby isn’t born yet and is the size of a coke can! When they made my uterine incision, they located Livy by ultrasound, they gave her a shot for pain, an MFM gently flipped her, and the pediatric neurosurgeon repaired her back. They gently tucked her back in and sewed me back up. I was in the hospital for 7 days- the first 24 hours with a pain pump, magnesium that made me feel like I was on fire, a catheter, and oxygen. After getting out of the hospital I was on strict bedrest (I could go to the bathroom and shower daily and only leave the house for weekly Dr. appts). You cannot have contractions, so you have to deliver by c-section by 37 weeks. I was actually put on hospital bedrest for 21 days with IV fluids 24-7 and had to deliver at 33.2 weeks.
As you can see, fetal surgery is more than what a tv medical drama shows! If you’re interested in learning more, the PBS documentary Twice Born is a more realistic watch!
As we celebrate her 5th Miracle Day, I still look back in amazement of what we went through and where we are now. I’m proud to be a fetal surgery mom, grateful for our journey, and look forward to where it takes us.