Coming together from worlds apart for spina bifida care

Molly Gotbeter giggles impishly as she accepts a sugar cookie and frosting from a nurse. She’s sitting patiently on an exam table waiting to see one of her favorite people in the world — Benjamin Warf, MD, director of Neonatal and Congenital Anomaly Neurosurgery at Boston Children’s Hospital.

For this visit to the spina bifida clinic, Molly has traveled from her home in Charleston, South Carolina. But her journey to Dr. Warf and Boston Children’s has been much longer.

Molly was born in a poor, rural region of China with a rare type of spina bifida, called lipomyelomeningocele. Children with this type of spina bifida have a large fatty mass on the back that attaches to the spinal cord and puts traction on it. If not treated, it can cause progressive difficulty with walking, muscle weakness, and bowel and bladder problems. Because Molly lived in an orphanage, she didn’t receive any medical care for her spina bifida.

A leap of faith

“When we told family and friends we were thinking of adopting a 2-year-old girl with spina bifida from China, they thought we were crazy,” says Brittan Gotbeter, Molly’s mom.

Brittan and her husband Tommy already had their hands full with three biological children, but they wanted to do more.

“My sister and I lost our parents as young children, and my adoptive mom made such sacrifices for us that I knew I wanted to give back,” explains Brittan. “When we were deciding, Mom gave me the best advice of all, she told me, ‘Brittan, sometimes in life you just have to leap.’ Molly was our leap.”

And they haven’t looked back.

The Gotbeters adopted Molly in January of 2014, and immediately started looking for a surgeon.

“Our local hospital wasn’t the best option for Molly’s specific needs,” says Brittan. “A friend told us about Dr. Warf, so I reached out and we scheduled the surgery for April. We headed to Boston with high hopes, never having met him.”

They knew right away that Dr. Warf was the perfect choice.

A passionate surgeon, a special bond

“What’s so neat about Dr. Warf, besides the fact that he’s brilliant and amazing, is his love of orphans and his passion for serving those in need,” says Brittan. “Looking back, it seems like it was the perfect next step in Molly’s journey that he became her surgeon. I really feel like he and Molly share a special bond.”

Molly’s surgery ended up being more complex than planned — she needed three surgeries and spent 40 days in the hospital. Through it all, the Gotbeters never doubted their decision.

“I knew we were in the best place possible, and with Dr. Warf as the captain of her team, I knew it would all be OK.”

Once home, Molly continued to thrive and grow. She was getting stronger every day. The family settled back into a normal routine…at least for a little while.

Molly and Wills

Taking a second leap

In 2015, the Gotbeters decided to adopt a second child from China. Five-year-old Wills also has spina bifida, though he has the more common kind, myelomeningocele.

“A big part of our decision to adopt Wills was knowing we had Dr. Warf and a great team at Boston Children’s that could care for him,” says Brittan.

Last summer, the whole family visited Boston while both kids had surgery: Wills had a spinal cord detethering surgery with Dr. Warf and Molly had an elective bowel surgery with Terry Buchmiller, MD, a general surgeon and co-director of the Colorectal Center at Boston Children’s.

“We were there for a month and made a big summer trip out of it,” says Brittan. “At first, Molly and Wills were on different floors, but both doctors worked hard to get them in a room together. I’m so thankful for a hospital that truly is family-centered — that made it a really special time for our family.”

Today, Molly and Wills are both in school and enjoy soccer, piano and swimming. Molly also plays the violin. They continue to visit Boston once or twice a year for their care.

“We love coming back to Boston because it’s like coming home.”

The Gotbeter family in China, from left, Hartley, Brittan, West, Wills, Thomas, Tommy and Molly

Learn more about the Spina Bifida Center at Boston Children’s Hospital.