Sweet ‘Twice Born’ Baby- Our Fetal Surgery Experience
Since the last update, a lot has happened and it’s happened very quickly!
We began our journey at CHOP, Children’s Hospital of Philadelphia on June 20th, where they evaluated me and my baby girl to see if we qualified for the open fetal surgery to repair the opening in her back caused by Spina Bifida.
My mom joined me for the 2-day consultation at the hospital while Jared stayed back in Florida to preserve some of his time off for later in the pregnancy/ post-partum. The consultations consisted of many tests, many meetings with doctors, mid-wives, social workers, genetic councilors, surgeons, therapists, and more. We learned a lot about the surgery and our specific case of Spina Bifida and what it would mean for baby girl.
What Does Spina Bifida Look Like For Our Baby?
Before this consult we were told that our baby had a sacral myelomeningocele, meaning her lesion was in the lowest part of the spine, which is good, but it was the most severe form of the deformity. What we learned during the consult was that she actually had a lumbo-sacral myeloschisis, which means that the lesion was higher up than expected, starting in her lumbar and ending in her mid-sacrum; that could have a more severe impact on her mobility issues. However, we also learned that a myeloschisis is more favorable than a myelomeningocele because it could possibly cause less damage if its fixed early on. There is less pressure being put on the spinal cord.
Without getting the fetal surgery, they told us we were looking at:
a high possibility of bowel/bladder control issues
increased risk for hydrocephalus
Chiari-malformation type 2
permanent mobility issues/feeling loss/weakness/possible paralysis of the knees down
What the fetal surgery would do is close the opening in her back that’s exposing her spinal cord, preventing further damage from occurring for the rest of the pregnancy. The damage mainly happens from physical injury (the spinal cord hitting the sides of the uterus, or pressure being put on the cord), and chemical injury (the amniotic fluid and toxins in the uterus coming into contact with the spinal cord). Damage that has already done to the spinal cord cannot be reversed, but they can prevent more damage from happening.
By getting the surgery, we would be looking at:
a high possibility of bowel/bladder control issues (that won’t change)
decreased risk for hydrocephalus (by about 40%. However they said our specific case would reduce it by 70% because her ventricles were normal sized.)
100% reversal of the Chiari-malformation
decreased mobility issues and risk of paralysis by 2 levels (meaning for our case that she may have issues in her feet but her ankles and knees should be stronger and have feeling)
https://www.chop.edu/health-resources/spina-bifida-surgery-during-pregnancy-illustrations
Qualifying for Fetal Surgery
The way the consultation worked was day 1 was filled with tests and meetings about the baby, surgery and recovery. TONS of overwhelming information. And at the end of the day you meet with the doctors and surgeons who reviewed all of the results and let you know if you qualify for the surgery.
If you do qualify for the surgery and decide that it’s a route that you’re interested in, you show up the next day for more meetings, but less tests. This day was more about mom than the baby. You learn about the NICU, what to expect when the baby is born (for the second time), and a lot more about recovery.
Luckily, we did qualify for the surgery and knew that it was the route that we wanted to take, without a doubt. It was the right choice for us and we have the support, time, and resources to be able to follow through with it.
At the end of day 2, they gave us the surgery date. The surgery has to be performed between 23 weeks and 26 weeks and 6 days gestation. At that point I was 21 weeks and 6 days, so we knew it would be soon but we didn’t know HOW soon. They told us surgery would be June 29th… only 8 days away. It was the most overwhelming moment of the entire consultation.
We left Philadelphia, I drove back to Rhode Island with my mom where Jared flew up to meet me and to see my friends and family for a few days. We tried to enjoy ourselves as much as possible before the surgery, especially knowing that I would be on bed rest for the next few months. We then returned home to Florida for 24 hours, packed up our bags and everything I would need for recovery, and headed up to Philly once again to get the surgery, this time for much longer.
Getting Open Fetal Surgery
We arrived to Philly two days before the surgery to get checked into the Ronald Mcdonald house, where we’d be staying for the remainder of pregnancy. My mom and my dad, as well as Jared, were here for support during the surgery. So thankful for that.
The day before surgery we had our pre-op appointments, where they did a few tests and we had a few more meetings, including one with the entire surgical team where they went over all of the details again and we signed our consent forms.
This is a very major, very rare and very invasive surgery that few surgeons perform. My baby would be exposed to the world for spinal surgery, and closed back up in my uterus for the remainder of pregnancy. They call them “Twice Born Babies”. That is nothing less than a medical and scientific miracle.
To my surprise, I was relatively calm considering all that was going on and what was about to happen. A few things really were keeping me calm and collected.
I knew I was in the BEST of hands. The surgeon performing the surgery was the man who pioneered the surgery, so we couldn’t have gotten anybody better to do it.
All of the support and love that we were getting was also a huge deal for us. Our friends and family, even extended family, were sending us videos wishing us the best and letting us know they had our back and I will cherish that forever.
Plus an honorable mention to Prozac and Buspar because I have no shame in my medication game.
Time for Fetal Surgery
We showed up to the hospital at 6am to get set up for the surgery, which would take place at 7am. The surgery, as major as it is, only takes 77 minutes! They try to make sure that mom and baby are under anesthesia for as little time as possible, which was a very assuring feeling.
The surgeons said that everything went great, and me and the baby were healthy the whole time through. Although I was out of it, and don’t really remember much about the day post-op, I remember feeling relieved that the surgical part was over. There were no issues during the surgery, however, when I came back into the room from the OR, I was supposed to have an epidural numbing me from the chest down for the next few days. The epidural was not working and I was in severe pain. Thankfully I don’t remember the feeling of the pain, but I remember the chaos of the doctors trying to fix it and me saying “ow” a lot and then fading back out. It was fixed in about 30 minutes and I felt much better.
Now We Recover
We are now 10 days post-op and still doing great. I have been on bed rest in the Ronald McDonald house in Philly, where we plan to stay for the remainder of the pregnancy. (If you haven’t heard of it before, the Ronald McDonald house is an INCREDIBLE organization and if you have questions about it, please ask me!) One of the conditions of getting the surgery, and qualifying for it, was being able to stay on bedrest within one mile of the hospital for the remainder of pregnancy. A price that was well worth it for the health of my baby girl.
As we continue recovery and learn more about the improvements of baby girl, I will keep this blog updated. We still have a long way to go.
If you have any questions about my experience, the diagnosis, our surgery, or anything, please feel free to leave comments or send me a message and I would be very happy to address them! Follow along on Instagram for more updates :)
Until next time!
-Jacqueline
