Kian’s Story: Preparing the Whole Family for Fetal Surgery for Myelomeningocele
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Kian had fetal surgery at Children’s Hospital of Philadelphia (CHOP) in February 2014 and was born four months later. He is now 5 years old and started kindergarten this year. His parents still can’t wrap their heads around the support the care team provided for their entire family, including Kian’s two older siblings, before birth, and still provides today.
It was between Christmas and New Year’s in 2013 when Kian was diagnosed with myelomeningocele (MMC), the most severe form of spina bifida, while he was still in his mother’s womb.
“It was horrible,” recalls Shauna of the 18-week ultrasound. The physician who made the diagnosis painted a very grim picture of the condition. The poor prognosis left Shauna and her husband, Anthony, feeling scared, sad and hopeless. It was a hard thing for their older children — a 7-year-old daughter and 5-year-old son — to witness.
But seeing Kian’s life now, five years later, Shauna says there’s nothing “poor” about it, and she credits CHOP for going above and beyond to support her family.
Fetal surgery for spina bifida offers hope
Kian with Dr. Adzick at the annual Fetal Family Reunion
Shauna discovered CHOP’s Center for Fetal Diagnosis and Treatment (CFDT) after searching for information about MMC treatments online, and traveled from the family’s home in New Hartford, N.Y., for an appointment. When her evaluation at the center found she was a candidate for fetal surgery, her older children witnessed her sadness transform into hope and comfort.
“The center offered us so much more than we were able to get at home,” says Shauna.
Once a patient is deemed stable after fetal surgery, the center may be able to work with referring maternal-fetal medicine specialists to have monitoring and delivery occur close to a family’s home. Shauna, however, stayed in Philadelphia for four months until Kian’s birth in CHOP’s Garbose Family Special Delivery Unit (SDU) because there were no specialists near their home with experience caring for women who have undergone fetal intervention for MMC.
After birth in the SDU, Kian spent two weeks in CHOP’s Harriet and Ronald Lassin Newborn/Infant Intensive Care Unit (N/IICU). The experience was a lesson in patience, perseverance, courage and sacrifice for the entire family. They were fortunate to have an outpouring of support from extended family, friends and their local community, as well as the team at CHOP.
Shauna’s children still talk about the impact the experience had on them and the support the CFDT team provided. Child life specialists and music therapists educated the children on spina bifida, helped them understand what to expect after their brother was born, and taught them ways to cope with being separated from their mom during her time in the hospital and at Kian’s bedside.
Facing the future with grit and determination
Kian has a cousin who is the same age as him. The two are best buddies. While Kian can’t do everything his cousin can, his mind isn’t limited. He’s full of joy and determination.
“Seeing the two of them play, explore and grow together is so heartwarming,” says Shauna. “You realize how many lives Kian’s life has impacted in such a positive way.”
Kian loves sports and being active. He does karate and T-ball, and this past winter he took part in a mini basketball clinic and got into adaptive skiing. He’s helpful, loving, sensitive, nosey and playful, and he loves socializing and activities like music and art.
“No one knows the intensity of his story, but I do. So, when I watch him in these activities, I’m just so proud of him and thankful for his life,” says Shauna. “Our life is a different normal now, but it’s still normal.”
Fetal surgery corrected the hydrocephalus Kian had in utero, and he hasn’t needed a shunt. He walks with lower leg braces and has complications with his bladder and bowels. Kian has regular follow-up appointments at a spina bifida clinic close to home, and the family returns to CHOP periodically for follow-up appointments with urology and neurosurgery.
Kian and his family consider Philadelphia a home away from home. Their favorite time of year is the annual Fetal Family Reunion, because it gives them a chance to catch up with families they met during their time at CHOP and touch base with the care team. Shauna also loves sending the team at CHOP messages about Kian’s achievements and all he continues to overcome.
“There are always the what-ifs because of what Kian faces, but overall he’s amazing,” says Shauna. “He’s going to do great things. He’s going to enjoy sports and be active in whatever capacity he’s able to. He has already taught me more in his five years than I will ever be able to teach him, and he doesn’t even know it. The experience with the center has given us perspective. We realize how blessed we can feel about the gifts in life that aren’t material. We are forever grateful.”
