Peyton’s story: A miraculous outcome after an unexpected spina bifida diagnosis

Photo courtesy of Kelsey Muegge

Last May, Kelsey and Clay Muegge, found out they were expecting their second baby and couldn’t wait to become a family of four in Jan. 2021. The thought of their two girls running around and playing together was so exciting, and with so much going on in the world at the time, this was the couple’s silver lining.

“Everything was going well with my pregnancy until our daughter’s 20-week anatomy scan,” Kelsey said. “Our routine ultrasound turned into an unforgettable and heartbreaking appointment when we got the suspected diagnosis of spina bifida for our baby girl. I’ll never forget laying there with a million questions running through my head and barely hearing my doctor’s voice tell me he’s very sorry to be delivering this news. We were then referred to Texas Children’s since it was the best, and thankfully, the closest option.”

Three days later, the Muegges made the one-hour-and-a-half drive to meet with Dr. Stacy Strehlow at Texas Children’s Fetal Center®. The couple prayed they would get better news at this appointment, but after another ultrasound, their baby’s spina bifida diagnosis was confirmed. After conducting research and discussing their options with their fetal team, the couple knew fetoscopic surgery would be the best option for their daughter, Peyton. At this same appointment, Dr. Strehlow performed an amniocentesis test, one of several tests the Fetal Center completed, to make sure Kelsey and Peyton qualified for the surgery.

“On the way home from that appointment, I remember feeling surprisingly at peace,” Kelsey said. “We prayed so hard between these two appointments that if it was in God’s will, He would heal Peyton’s spine before we came up on Sept. 17. Even though that wasn’t the case, I still managed to find peace knowing He would be our light through the unknown in all of this. After a week and a half of waiting, we got the amniocentesis test results back and had gotten the results we hoped for. On Sept. 28, we returned to Texas Children’s for more ultrasounds and an MRI to officially confirm Peyton and I qualified for the surgery. After a long day of appointments, we had our last appointment which was a video visit with Dr. William Whitehead. During this visit, he told us Peyton and I were candidates for the surgery.”

The Muegges were very nervous, but also so ready to move forward with surgery so their daughter could have the best possible outcome. The very next day, Kelsey had several video visits with the fetal care team. They explained everything from before surgery to post surgery, delivery and any complication that could occur to ensure Kelsey and her husband understood everything about the procedure. Before they found out if they qualified for the surgery, the couple knew without a doubt having the in-utero surgery would give Peyton the best outcome in life and that’s all they wanted for their daughter. It was a definite yes. A few days later, they received the call that Peyton’s fetoscopic surgery was scheduled for Oct. 12.

When Kelsey was 24 weeks and 5 days pregnant, Texas Children’s Obstetrician and Gynecologist-in-Chief, Dr. Michael Belfort, and pediatric neurosurgeon, Dr. William Whitehead, performed Peyton’s successful in-utero spina bifida surgery. A few weeks later, when Kelsey came in for another ultrasound, her amniotic fluid levels were very low. As a precaution, Kelsey was admitted to Texas Children’s Pavilion for Women® where she spent five days under close monitoring before she could be discharged. After a few days spent with her husband and oldest daughter in Houston, Kelsey returned for another ultrasound appointment on Nov. 12. Her fluid levels decreased once again, and she was admitted to the hospital.

“It looked pretty certain that I would be admitted for the duration of my pregnancy,” Kelsey said. “I knew I needed to be in the hospital so Peyton could be monitored for her safety, but the thought of not seeing my 2-year-old daughter until delivery in January was heartbreaking. The next day, my doctors came in to tell me that they made arrangements to where I could see my daughter outside in the rose garden. The weeks in the hospital were long, but thankfully they flew by. Dr. Nassr, Dr. Sanz-Cortes, Dr. Shamshirsaz, Dr. Espinoza, Dr. Donepudi, Dr. Sun, the nurses, CNAs, therapists and everyone in between, all did their best to make sure I was comfortable and happy during my hospital stay. Thankfully, I got to spend Thanksgiving and Christmas outside in the rose garden where my family and I made the best of it. While in the hospital, I had a 6-week post-surgery MRI that showed Peyton hadn’t developed hydrocephalus and her closure from the spina bifida repair appeared intact, which were both huge miracles for us.”

After almost seven weeks in the hospital, Peyton was born on Dec. 29 at 35 weeks and 6 days. After a 10-day stay in the neonatal intensive care unit (NICU) at the Pavilion for Women, the Muegges finally headed home with their newborn daughter for the first time as a family of four all under one roof.

“Since we’ve been home, we’ve had several check-ups that show Peyton has not developed hydrocephalus and her kidneys and bladder look good,” Kelsey said. “She does have hip dysplasia due to being frank breech, but after a follow-up on April 21 and 13 weeks of wearing a Pavlik harness and rhino brace full time, her hips are looking great. We are now starting to wean out of the rhino brace by only wearing it 12 hours a day instead of 24/7. Peyton is 6-months-old, and when we had our second follow-up head ultrasound, we got the good news that Peyton has not developed hydrocephalus. Our girl is a true testimony of healing and answered prayers. We will continue to praise God for the miracles He’s continuing to unfold and for guiding us to Texas Children’s for Peyton’s care.”

The Muegge family has a special message for parents who are going through similar challenges:

“For anyone going through this journey, I just want to say, hold on to your Faith. Talk to God and trust that the plan He has for your baby will prevail. Now that our daughter is here and we are back home figuring out our new normal, I can confidently say that I know our Lord walked us through this journey and healed our daughter through surgery so that when people hear our story or look at our little girl, they see a miracle that only God could perform. Through trust, belief and prayer, he provided. Even though there are still so many unknowns, we continue to lay our worries out to Him, knowing His gentle loving hand is always there to lift us up. So for anyone going through something similar to our story, just know it’s all going to be okay. No matter what happens, just hold on to your faith and trust in Him. “

Texas Children’s Fetal Center is among the nation's leaders in providing high-risk maternal care and the diagnosis and treatment of abnormalities in unborn and newborn infants. Click here to learn more about our Fetal Center and the fetoscopic spina bifida surgery pioneered at Texas Children’s.