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Surgery before birth: Carter’s spina bifida story

Kasey Hilton welcomes son Carter to the world, 11 weeks after fetal surgery to repair his spina bifida.My husband, Mike, and I were so looking forward to our baby’s 19-week ultrasound so we could find out the gender. That moment didn’t actually turn out as we had envisioned. In addition to finding out that we were having a precious baby boy, we also learned that he had spina bifida, meaning that part of his spinal cord was exposed outside of his body. This came as quite a shock. While I had only heard of spina bifida, my husband is a chiropractor and, with his educational background, knew all about it. For me, however, ignorance was bliss that day.

After the ultrasound and finding out about his diagnosis, we spent the day meeting with various experts from the Fetal Diagnosis & Treatment Center at C.S. Mott Children’s Hospital and Von Voigtlander Women’s Hospital, including a genetic counselor and several members of the Maternal-Fetal Medicine team. We learned about spina bifida and the treatment options available. They told us about a relatively new surgical procedure that could treat our son before he was born. Although not a complete cure, the surgeons would repair the spinal canal and cover it with skin to prevent further trauma. Research demonstrates better outcomes with this approach compared to standard surgery after birth. While there were risks for both me and my unborn son, which the team carefully explained to us – we did not hesitate to say yes in light of the potential to improve his outcome.

fetal spina bifida diagram thumbThere was a lot of testing to make sure the baby and I were good candidates for the surgery. I had concerns, as anyone would, but knew I was in good hands. On July 29 at 23.5 weeks, we had the procedure. I was put under very heavy anesthesia to anesthetize both me and my son. There were five surgeons involved in the procedure – Dr. George Mychaliska, a Pediatric Surgeon, Drs. Marcie Treadwell, Deborah Berman and Clark Nugent, Maternal Fetal Medicine Specialists, and Dr. Cormac Maher, a pediatric neurosurgeon. Essentially, the doctors performed a version of a C-section without fully delivering our son. Once they had access to him, the pediatric neurosurgeon performed the delicate operation to repair his spinal canal.

They sewed me back up and we waited and hoped for the best. After a few days in the hospital I was able to go home, but was camped in my bedroom on total bed rest for a month. My husband Carter Hilton underwent surgery to repair a congenital defect called Spina Bifida 11 weeks before he was born.practically transformed the room into a dorm room, complete with mini fridge. Everything I needed was right there. After that first month, I was gradually able to get out a little to dinner or a movie with our doctor’s permission.

We were hoping our son would be delivered at 36 weeks, but knew there was a possibility that he’d come earlier. Because of the surgery, they were monitoring me closely for signs of preterm labor. He was born via C-section at 34 weeks exactly. He has been doing very well ever since.

In December, the doctors did put a ventriculoperitoneal (VP) shunt in his head to help decrease the brain fluid levels. It was a relatively quick and very successful procedure. He’s now 4 months old, but if you adjust his age for the fact that he was premature, his adjusted age is 11 weeks. We call him our chunky monkey because he now weighs 17.5 pounds. His cognitive function is normal and he sees a physical therapist regularly. For the most part, he’s on track physically with most babies his adjusted age. He moves his legs and kicks a lot!

Carter Hilton, who underwent fetal surgery for spina bifida 11 weeks before birthWe’ll have to watch him for various milestones in his life. We won’t know about his walking until he’s old enough to walk. There may also be some challenges with his bowels and bladder, but we won’t know that until he’s old enough to potty train. For now, he’s great and we are grateful to the entire fetal team at U-M.

We knew our son was going to be a strong child after everything he’s gone through — even before birth — so we wanted to give him a strong name. My husband and I are both U-M Alum and huge Michigan Football fans, and we decided to name our son Carter after Anthony Carter. I had always admired him and was able to meet him when I was doing my student teaching. Anthony Carter wore number 1 at Michigan. Our Carter was the first to have this procedure at Mott and he’s always number 1 to us. We bought a #1 jersey and had everyone on our Mott team sign it. It now hangs proudly in Carter’s room.

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Kasey HiltonKasey Hilton, her husband, Mike, and their son, Carter, live in Whitmore Lake, Michigan. They are currently planning a fundraiser to support spina bifida research at the University of Michigan Health System and the Spina Bifida Association. You can follow their story on their blog.

 

 

best children's hospitalsUniversity of Michigan C.S. Mott Children’s Hospital is consistently ranked one of the best hospitals in the country. It was nationally ranked in all ten pediatric specialties in U.S. News Media Group’s “America’s Best Children’s Hospitals,” and among the 10 best children’s hospitals in the nation by Parents Magazine. In December 2011, the hospital opened our new 12-story, state-of-the-art facility offering cutting-edge specialty services for newborns, children and women.

4 thoughts on “Surgery before birth: Carter’s spina bifida story

  1. avatar
    Jill Wylie on said:

    I have a 22 year old son, Cody James Wylie with Spina Bifida. The surgery you haf, was just brought into the medical world.

    My son has been through so much in his life, but he is a trooper. He is physically challenged, but mentally just fine. I still remember the day we had our ultrasound like it was yesterday.

    May GOD continue to bless your whole family with Carter and all his accomplishments. ♡♡♡♡

    • avatar
      Teresa Hair on said:

      My husband and I found out at our 18 week u/s our son has spina bifida. We will be having the fetal surgery June 23rd and hoping for the best!! The defect is around L3-L4 so its very low in the spine. I love your story and gives me so much hope. Thank you for sharing!!

  2. Jill,

    Thank you so much for the kind words and encouragement! It’s so nice to hear from other families and know that we are a strong community. I cannot thank you enough. Seeing this message made my day :)

  3. avatar
    Lisa and Dale Parker on said:

    Sooooo happy to hear your baby boy Carter is doing so well. U of M in Ann Arbor is one of THE BEST HOSPITALS. I am here now with my husband Dale Parker. And they are taking Great care of him. And 15 yes ago they did 8 hr heart surgery on my father Randall Ray Davis. And they were awesome with my father too. Wish you all the best of Luck down the road an hope you all stay Happy and Healthy!! Sincerely Lisa Parker.

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