Fetal Surgery for Myelomeningocele: Trey and Emmett’s Story
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Trey and Emmett have a lot in common. They’re both from Ohio, they both have spina bifida, they both underwent fetal surgery at Children’s Hospital of Philadelphia (CHOP), they were both born in the Garbose Family Special Delivery Unit, they both love playing hockey, and they are both buddies.
When Emmett first met Trey, he was really excited. It was the first time Emmett had met someone who also wore ankle foot orthotics (AFOs) — plastic braces in his shoes that help him walk by supporting his lower legs and ankles. They’d soon find out that AFOs are just one of many things they have in common.
Emmett’s mom, Megan, and Trey’s mom, Danielle, didn’t know each other when they were pregnant with the boys, and their pregnancies happened a year apart, but they share many memories of that time. They saw the same fetal medicine (MFM) specialist near Columbus, Ohio, for their 18-week ultrasound, and both learned during that appointment that the child they were carrying had myelomeningocele (MMC), the most severe form of spina bifida.
The MFM explained the condition and laid out all of their options, one of which was fetal surgery at CHOP’s Center for Fetal Diagnosis and Treatment. Danielle and Megan both spoke to the same fetal therapy coordinator, Cathy Mackell, BSN, RNC-NIC, when they first called the center to make an appointment. And, after the two-day evaluation, both families decided fetal surgery would be the best option for their child.
“The biggest thing was the potential benefits of it,” says Danielle. “Reversing hindbrain herniation and not having a shunt. The fact that we had a chance to better his life for the future, we wanted to give him the possibility of better mobility and decreased surgery if we could.”
“Sitting down with Dr. Adzick set it in stone for us,” says Megan, recalling the consultation after the evaluation, where she met all of the members of the care team, including fetal surgery pioneer N. Scott Adzick, MD, MMM. “He was both knowledgeable and very personable with us. We felt very secure talking with him. We knew we would be in really good hands.”
Trey and Emmett were both born in CHOP’s Garbose Family Special Delivery Unit, and each spent some time in the Harriet and Ronald Lassin Newborn/Infant Intensive Care Unit after birth. As the boys grew up, they each confronted different medical issues.
Trey had hydrocephalus and underwent a surgical procedure to treat it called endoscopic third ventriculostomy/choroid plexus cauterization (ETV/CPC) when he was 5 months old. He also had surgery for tethered cord when he was 8 months old.
Emmett had hip dysplasia and underwent hip reconstruction surgery right before his second birthday. He also has some bladder issues.
When Trey was 5 and Emmett was 3, the families met at a summer picnic held by a support group for Ohio families affected by spina bifida. Danielle and Megan got to talking and Megan learned that Trey plays on a sled hockey team.
Sled hockey is an adaptation of ice hockey designed for players who have a physical disability. Players sit on sleds and use special hockey sticks with metal teeth on the tips of their handles to navigate on the ice. Trey and Emmett are both active little guys who love sports and are at a similar mobility level. Megan thought sled hockey seemed like a great activity for Emmett, both physically and socially.
Emmett joined the hockey team that year. Since then, the families have seen each other nearly every week for hockey practice or tournaments. Emmett has grown to love hockey just as much as Trey. Not just because he gets to see his buddy, but also because it’s the only time he is around other kids with spina bifida. Megan is also glad to have found a supportive group of parents who have been through what she’s going through.
“Until we got involved with sled hockey, we felt out on our own a little bit,” says Megan. “It has been such a difference knowing families now. Now we feel like we can handle whatever is put in front of us.”
With sled hockey being such a big part of the year, the families are excited to watch the boys grow up together. They’re hoping they can provide a support system for each other as they go through school.
“Danielle has been a rock for me lately,” adds Megan. “Trey is one step ahead of us, so she’s been a wealth of knowledge and reassurance. It’s been a godsend. Everybody in my life has heard me talk about Danielle because of how much she’s helped me know what’s coming next and that we’re going to be OK.”
The two moms are also inspired by the teenagers on the team who are going to high school, getting their driver’s licenses regardless of their mobility issues, and going off to college.
“It’s really reassuring to talk to those moms and see that they’re going to be OK,” says Danielle. “Our kids really look up to those older kids a lot. Seeing other kids where it’s just the new normal. They are fine. They are living life to the fullest. They are independent and they make it through.”