Newborn baby in hospital post-delivery room
Disability | Family | Spina Bifida

Why We Chose Not to Have Prenatal Surgery (And How It Turned Out)

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Although it is impossible to tell you how many surgeries your child will need or when to expect the next one, that very first surgery could be before your little one is even born. This type of surgery is called open fetal repair surgery for myelomeningocele (also known as prenatal surgery). 

The option to have prenatal surgery is between 19 and 26 weeks gestation. You and your baby have to meet certain conditions and testing has to be done to make sure that both of you are the right fit for this kind of surgery. 

The Benefits of Prenatal Surgery

Let me share with you the information that we received about the fetal surgery. Once it was confirmed our baby did have spina bifida, we had two very L-O-N-G and intense days at the hospital meeting various doctors, nurses, and social workers. 

The first day was a series of tests. They did a fetal MRI, fetal echocardiogram, and an ultrasound. The MRI and ultrasound were to confirm the baby did have spina bifida and to determine where along the spine they thought the defect (or opening) was located. They predicted his defect was from L1 to S1, which is the lower part of the spine affecting his legs and feet movement, and bladder and bowels. The fetal echocardiogram was to make sure his heart was healthy enough to withstand surgery and did not have any defects. 

The second day we meet with various doctors and were given the pros and cons of the surgery. We were told it appeared the baby and I were good candidates for the surgery. If we wanted to proceed, an amniocentesis would need to be done. I believe that was to rule out any chromosomal defects.

According to the MOMS (Management of Myelomeningocele Study) Trial, this prenatal surgery would improve his chances of not having to need a shunt, “corrects” the hindbrain herniation (also known as Chiari II Malformation), and increases his chance of walking without crutches or other equipment at 30 months.* 

Doctors think that once the prenatal repair is done and the leakage of the cerebrospinal fluid (CSF) is stopped, it causes the brain to shift upwards to the correct position in the skull. This allows the CSF to flow freely and prevents the need for a shunt. The surgery also protects the spine and exposed nerves from any further damage while in the womb, giving him a better chance at walking. 

Postnatal surgery on the other hand does not correct the Chiari malformation which means there is a higher chance of needing a shunt. Also, any damage to the nerves while in the womb is permanent.

These were the possible benefits of having the surgery as long as the baby was able to stay in the womb long enough to mature to full term or make it to around 32 weeks.  According to the doctors, if the baby was born before 32 weeks, it did not give the surgery enough time to help the brain to rise back into the skull to improve the flow of CSF.

The Downside to Prenatal Surgery

There are several pretty heavy risks involved that you have to consider. 

First, the mother has to stay in the hospital for about five days after the surgery. Then she has to stay close to the hospital for about two weeks and have someone with her 24 hours a day. If she has no complications after three weeks, then she is able to return home until it is time to deliver. The delivery would have to be by cesarean birth as would any future deliveries due to the scar caused by the surgery on the uterus. 

In our situation, we lived an hour and a half away from the hospital with no family close by the hospital that could be there for me while I recovered from surgery. My husband still had to work so he couldn’t stay with me. 

Other factors we had to consider is that I did not have enough leave to do the surgery and have maternity leave. We also had a five year old that still needed her mommy and daddy to be present in her life. 

Another downside to the prenatal surgery is the possibility of an early delivery which would mean an even longer hospital stay which could be weeks or months depending on what complications the baby was having. Whereas, if the surgery was done postnatal, the baby would typically be in the hospital for two weeks to give the back time to heal while the baby was on his belly the whole time. 

One of the factors doctors consider when determining if the baby is a good fit for this surgery is the size of the ventricles in the brain. If the ventricles are already of a certain size, then that is an indicator that the baby will for sure need a shunt at birth. 

The ventricles in our son’s brain were already of significant size so there was already a big possibility that this surgery would not prevent a shunt. 

The most alarming consequence of the prenatal surgery was the possibility of an early delivery. We were told that the uterus is very tricky and a lot of times the water ends up breaking very easily causing a very early delivery. We were warned that if he was born before 30 weeks it was a lot higher of a chance that he might not survive. 

Ultimately, we were not willing to chance his life just so that he “might” not have to have a shunt. We decided we would rather have our son with his handicaps than to risk his life. 

I knew my body and my mother’s intuition was telling me my body could not take this type of surgery. My firstborn had to be delivered early and was a NICU baby. The year before this pregnancy we suffered a miscarriage. It seemed very risky to go into this type of surgery. 

This decision was one of the scariest and toughest decisions my husband and I have ever had to make. It felt as though we were determining not only the fate of our child’s future but his unborn life as well. We were not willing to take the chance that he might not survive because of this surgery so we prepared ourselves that he would have the surgery soon after he was born. 

The Final Decision for Prenatal Surgery is in Your Hands

Please don’t feel persuaded into thinking that prenatal surgery is the better option because it is not. There is a lot of pressure in making this kind of decision but just know that whichever way you decide, your decision is the right decision for you and your family. No one can tell you which way is the best nor should they try to tell you which is the better option. You are not limiting your child should you choose to not have the surgery. 

No one could have predicted my son’s outcome. Even though we were presented with this opportunity, we quickly were at peace with our decision. Four months later our son was born by a scheduled c-section at 38 weeks. He was born at one hospital and the transport team from the children’s hospital was there waiting to take him where he would have the surgery to repair his back. 

We were initially told the surgery would be done within 24 hours of birth, but this kid came out of the womb with skin covering his lesion. He was our miracle baby! So, instead of surgery, they decided to monitor his back for any signs of CSF leakage. Nine days later we were headed home! 

He did eventually have his back surgery but the doctors wanted to wait until he was a little older and stronger. They repaired his back at seven months old, six days before Christmas. And we were home before Christmas!   

He did have to have a shunt at almost five months old, but he has made leaps and bounds developmentally in all areas since then. He does wear orthotic braces for his feet and ankles, and he’s so close to walking on his own without any assistive devices.

So just remember that even the doctors don’t have it all figured out. Trust your instincts, Momma. God gave them to you for good reason! 

What are your thoughts about the prenatal surgery? Were you told anything different from what we experienced? Leave a comment below and let me know!

*The MOMS trial is reported in the New England Journal of Medicine, March 17, 2011. The article is “A Randomized Trial of Prenatal versus Postnatal Repair of Myelomeningocele.” 

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