My name is Jessica and this is my story:

I was pregnant with my second child, Parker. At 23 weeks everything seemed right on track. But that all changed during an ultrasound anatomy scan when a sac was found on Parker’s spinal cord. The doctor explained, in his medical judgment, the worst-case scenario was that Parker would need a wheelchair as he grew up. He referred me for further evaluation to Orlando Health Winnie Palmer Hospital for Women & Babies, which was about two hours from home.  

After further scans at the Fetal Care Center at Orlando Health Winnie Palmer, Dr. Cole Greves and Dr. Samer Elbabaa provided a diagnosis of spina bifida and suggested fetal surgery as an option, explaining both the benefits and risks. Because the benefits to Parker outweighed any risks, I said “yes, that’s what I need to do,” without knowing the extensive qualifications and testing that needed to get done before 25 weeks and six days of pregnancy – the cutoff date for fetal surgery.

We got started right away. That same day we underwent psychological evaluations, genetic counseling, blood work and an amniocentesis. The next day followed with more testing: a fetal cardio work up and a fetal MRI. The following day we did even more testing; we got all of it done in record time and received  approval for in utero surgery.

On the morning of my surgery, anesthesia took over. Before I knew it, I was back in my hospital room as if nothing happened when a lot actually had. The surgery itself was extensive and consisted of a team of more than 13 doctors and nurses.

While recovering from a successful procedure, I was given strict care instructions so I could hopefully make it to 37 weeks of pregnancy — three weeks beyond the average gestation of 34 weeks experienced by patients in the spina bifida MOMS clinical trial. After spending one week in the women’s intensive care unit (ICU), I was sent to the Ronald McDonald House next door to Orlando Health Winnie Palmer for two weeks, so that I was close to the hospital for ongoing evaluations.

Little by little, the recovery process became easier, especially with the guidance and love of my fetal care team. I’ve never had such great care than that provided by Dr. Greves, Dr. Elbabaa and their nurse, Diane. After every visit, my confidence grew and I was more than ready for my little Parker to be the first patient to make it to the scheduled due date. I am happy to say that we were. The team and I were elated when we made it official with a due date of February 6, 2019 — 37 weeks exactly.               

When the time came to bring Parker into the world, I was so thankful that all the people in the delivery room had invested their time and knowledge into helping give my son the best possible outcome in life. I’ve never had better care, ever. Parker was everything I could have asked for and then some — 5 pounds, 5 ounces and looking exactly like his big sister.

After Parker was born, the fetal care team determined that Parker’s surgery went even better than expected. Parker was the first baby born with spina bifida at Orlando Health Winnie Palmer who did not need to be admitted to the Neonatal Intensive Care Unit (NICU). Two days later, we were headed home.

Now that Parker is 6 months old, I can see even more benefits from the surgery — especially with how strong he is in his lower extremities. In physical therapy, he’s moving muscles that, according to textbooks, he shouldn’t be able to move. He’s like any other baby his age. He plays with his toys, he’s vocal, laughing and aware of everything — just like my 3-year-old daughter was at 6 months. According to our rehabilitation center, Parker may use a posterior walker and braces when learning to walk; however, considering where his lesion sat before it was closed in fetal surgery, I am absolutely elated with these results.

My husband tells me Parker is the baby I didn’t know I absolutely needed. Today, he’s introducing me to people I didn’t know I needed in my life, like other moms and families through the nonprofit organization, Redefining Spina Bifida. It’s wonderful to share our stories in hopes that they can benefit just one person.

Parker Parker Parker