Delaney’s Story: Fetoscopic Repair for Spina Bifida

Jennifer Rossi was 20 weeks pregnant, brimming with excitement to see her baby girl on the screen during her anatomy scan.

“I was so excited to go to my anatomy scan – all my previous testing had come back clear and all our previous ultrasounds looked good!” said Rossi.

“I was recording a video to send to my boyfriend, Delaney’s father, who was deployed at the time and I remember just a few minutes into the ultrasound, the technician said ‘you may want to stop the video, there is something wrong.’ It was the worst moment of my life. In a fog, I was taken into my doctor’s office and she referred to me to a specialist for immediate further testing,” Rossi continued.

The next day, Delaney was diagnosed with spina bifida myelomeningocele around the S1 level of her spine. The family had never heard of spina bifida before their unborn child’s diagnosis.

“At this point, Delaney did not have hydrocephalus and no clubbing of her feet, but it was easy to see the open lesion around the S1 level and she had a Chiari malformation. The doctor told me about fetal surgery repair options to consider and thought we might be good candidates, and encouraged me to research and consider my options,” said Rossi.

Jennifer has close family members who live in Houston and they recommended to contact Texas Children’s Fetal Center.

“I called Texas Children’s Fetal Center and spoke to a nurse coordinator who was so kind, supportive and helpful during this very scary time. She took me through the process and got me scheduled to come to Houston for a fetal surgery evaluation,” Rossi said.

Two weeks after Delaney’s diagnosis, Rossi was in Houston at Texas Children’s for an evaluation to determine if she qualified for fetal surgery.

“It’s a long two-day process, but the Texas Children’s team takes you through it step-by-step and multiple specialists sat with me to give me more specific information on Delaney’s prognosis and answered all my questions. I learned so much about spina bifida and what to possibly expect that even if we had not proceeded with fetal surgery, the assessment was well worth it,” said Rossi.

Jennifer learned both she and Delaney were candidates for the surgery and decided to proceed. They first returned to San Diego and then packed up to relocate to Houston for several months to undergo fetal surgery, recovery and deliver at Texas Children’s Pavilion for Women.

“I still look back on the night before the surgery. The team wanted us to meet one more time with all of the doctors that were going to be part of the team for the operation. We were in this big conference room with everybody and you look at the brilliant minds that have developed this fetoscopic surgery and what they’re capable of doing and I was just amazed,” said Rossi.

Rossi’s surgery was scheduled at 24 weeks and 3 days into her pregnancy and the fetoscopic spina bifida repair procedure went smoothly.

 

“On the morning of surgery all the preparations are intense, but the team did an amazing job of keeping me comfortable and walking me through the process. My nurse coordinator held my hand through the entire process which was very comforting,” Rossi said.

Jennifer experienced some chorioamniotic separation after the fetal surgery that was monitored several times a week and 28 weeks into her pregnancy, she was admitted to the hospital for bedrest until she delivered. Though they had hoped to have a full term delivery, Jennifer delivered via C-section at 30 weeks gestation.

“Delaney came into the world with a healthy cry with her back fully healed [from the fetal surgery] and even at 3lbs and 1oz, she was so strong. I was able to hold Delaney for a little bit before she was taken to the NICU where I knew she was in great hands. I met with the NICU team several times prior to the delivery and was well prepared for the NICU process,” said Rossi.

The family was told to expect a NICU stay of about 10 weeks, which happened to include staying in the hospital for several days during Hurricane Harvey.

“Delaney progressed each week in the NICU and her nurses and I cheered every day when she gained weight. It was a big day when she hit 5 lbs! Delaney experienced typical preemie issues with bradycardia and apnea that she outgrew and we just had to be patient with feeding and growing, until she was ready to go home,” Rossi shared. 

The family flew home to San Diego on Sept. 4, 2017 and started life as a family of four.

“We knew to expect a lot of doctor’s appointments and therapy sessions in the first few years and it all just became part of everyday life for us. Delaney’s overall health continued to be stable throughout her first year and when she turned 1, she had her first MRI which showed no hydrocephalus and that her Chiari malformation had completely reversed!” said Rossi with joy.

The family continues to visit the Spina Bifida Clinic at Texas Children’s every six months to monitor Delaney’s growth and progress. 

“It’s always so wonderful to see the team when we visit; they are like family to us,” she said.

Delaney started weekly physical therapy sessions when she was six-months-old and she started walking independently shortly after she turned 2. She uses some slip-in orthotics in her shoes for some extra support, but does not require any bracing at this point.

Now age 3, Delaney is thriving. She attends preschool and loves her teachers and friends.

“The social interaction and structured activities have helped her speech development and fine motor skills progress significantly, and we are continuing to do physical therapy to build leg strength and balance for stairs and things like jumping,” said Rossi.

Delaney goes to swim lessons weekly as well as toddler gym/play sessions and loves both. 

“Delaney continues to amaze us. She runs, plays and does everything she wants to do – you would not be able to pick her out of a group as having spina bifida. We believe the fetal surgery and excellent care we receive at Texas Children’s Hospital has made all the different in Delaney’s quality of life!” exclaimed Rossi.

Though they know there will always be some challenges to overcome, they celebrate all milestones and take nothing for granted.

“We have a happy and healthy little girl, who is the biggest blessing and miracle in our lives!” says the couple.