Mom and Baby Thriving After Open Fetal Surgery for Spina Bifida at 25 Weeks

For Spenser and Jessica Trinkle, their baby, Parker, is a miracle.

Last fall, expectant mother Jessica Trinkle went in for her routine OB exam and ultrasound check-up. This was her second child, and she was about halfway along in her pregnancy, when something alarming showed up on the scan.

Her doctor explained that a sac was found on her baby’s spinal cord. That day, her son, Parker, was diagnosed with myelomeningocele (MMC), the most common and most severe form of spina bifida. This is a condition where the backbone is prevented from forming properly—and it can cause a range of physical or intellectual disabilities.

It was entirely possible that Parker might need to use a wheelchair for his entire life.

Jessica returned home and began searching the Internet for more information, and she came across something that gave her a glimmer of hope: in some cases, myelomeningocele can be surgically operated on, during pregnancy, to prevent further damage.

Repairing his spine would require “open fetal surgery”—an operation that involves surgically cutting open the mother’s abdomen and uterus, lifting the baby slightly out to operate, and surgically closing the opening in the baby’s back before returning him. In some ways, it’s like being born twice.

Due to recent advances in MRI technology and 3D and 4D ultrasound imagery, open fetal surgery has shown to be effective in limiting the damage of conditions like myelomeningocele.

In fact, in 2011, a groundbreaking clinical trial comparing prenatal repair of MMS to post-delivery repair proved so promising that the trial was terminated early. Those with prenatal repair showed significantly better results; 42% of infants who received in-utero repairs could walk, compared a 21% postnatal success rate, and the trial also showed better neurological outcomes.

In some ways, it’s like being born twice.

For parents like Spenser and Jessica, these results were promising and hopeful.

Open fetal surgery is a complex and challenging procedure; it’s a serious decision to move forward with it, for any condition. It requires a pediatric neurosurgeon with a high level of experience and even then still poses risks for both mother and baby.

But spinal cord damage is progressive during gestation, so Spenser and Jessica had to make a decision quickly.

Through Facebook, Jessica found a parenting support group for moms with children diagnosed with spina bifida. Amazingly, the mom in charge of the group happened to live in her town, and had also undergone open fetal surgery to repair her child’s spine.

Her baby’s surgery (and others in the group) had been successful—and this gave Jessica reassurance.

Days later, they met with their specialist, and already knew their answer. “The neurosurgeon brought up fetal surgery and my first words were, yes, that’s what I need to do. Let’s do it.” They spent 10 hours in the hospital that day getting all the required evaluations and testing done, and scheduled the surgery for just 9 days later, at 25 weeks gestation.

Jessica would need to stay in the hospital for several weeks, so they spent those 9 days preparing for that stay and quickly organizing childcare arrangements for their three-year-old daughter.

During this time, the couple received immense support both emotionally and financially. A Facebook fundraiser of $10,000 was coordinated by a friend, and funds were raised 24 hours later with donations from over 300 people.

“It felt as if the support we were garnering from our community was just what we needed to help lift some of the pressure weighing us down,” Jessica said, but at the same time, it was hard to process all of this so fast.

“Two nights before the surgery was the last night I was going to be able to snuggle and watch a movie with my daughter, just like any other evening. She fell asleep in my bed while I silently sobbed. I wasn’t ready to leave her for that long and I wasn’t ready to not give her my all. ”

When the day of the surgery arrived, more than 13 doctors and nurses were involved. A 10-inch incision was made into her abdomen, a 5-inch incision into her uterus, and mock amniotic fluids were continually infused throughout surgery.

The surgery was a success, and Jessica stayed in the hospital for three more weeks recovering before she was allowed to go home, where she was given a strict list of rules about bedrest.

“Two nights before the surgery was the last night I was going to be able to snuggle and watch a movie with my daughter, just like any other evening. She fell asleep in my bed while I silently sobbed.”

With support from her husband and daughter, she was able to carry Parker to 37 weeks without complications. He was delivered via C-section at Winnie Palmer Hospital in Orlando on February 6, 2019, weighing 5 lb. 5 oz.—and in the 70 years that Winnie Palmer hospital has had a NICU, he was the first fetal spina bifida patient who didn’t need any NICU time.

According to Spenser and Jessica, out of almost 80 fetal surgeries that their neurosurgeon has done for Spina Bifida, Parker would rank in the top 5% of outcomes after birth. “Movement is weak in his legs [right now],” they said,  “but at this rate who knows what else our little guy is capable of.”

Even though the experience was stressful, the outcome of this surgery was everything Jessica and Spenser had hoped for.

“Today little man is 1 month and in that month our world has changed. Although at times that change has been overwhelming, I can honestly say he has made this family stronger than I ever knew possible. Of course I wish I could say my son was perfectly healthy and didn’t have “special needs,” yet at the same time, I’ve come to realize: he is just that special.”

As precision in ultrasound technology continues to advance, the future of fetal surgical operations is promising—and opens the door for many future possibilities for developing babies in utero.

“Being parents to a miracle is knowing that every day is a blessing & gift; it means cherishing every moment, every breath with such intensity that you feel tears come to your eyes for no apparent reason.” – Spenser & Jessica Trinkle

To follow along with their journey, Like their Facebook page, Positively Parker.

Instagram: @jess.jtrinkle_Facebook: Positively Parker

Photos by: @ebu.photography

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