Harper’s Story: Expert Care and Hope for Children with Spina Bifida
Harper’s Story: Expert Care and Hope for Children with Spina Bifida
Reviewed by Gregory Heuer, MD, PhD
Reviewed on
Harper is a 3-year-old girl who greets the world with a raspy, joyful laugh that fills every room. She is observant, thoughtful and endlessly curious. She asks strangers about their favorite colors and hugs every person within sight because she never wants anyone to feel left out. Her parents, Jesse and Patrick, call her “Sassy molassy,” sharp as a whip and silly at the same time.
Harper’s personality is strong and clear. She loves horseback riding, swimming, arts and crafts, and long dinners with her family. She also lives with spina bifida, a condition she was diagnosed with before she was born.
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Jesse: Going into your 20 week anatomy scan is a normal process.
Patrick: Went in skipping into that appointment. And it went from a joy of a pregnancy to
Jesse: a problem.
Patrick: how do we solve this problem and figure out a solution?
Gregory Heuer, MD, PhD: When a woman's pregnant with a baby, they'll get a specific kind of scan called an anatomy scan, and what that scan's looking for is if there's anything that just doesn't look quite right. Jess had had an MRI, an ultrasound, so we knew a lot about this baby already. Her spinal cord was outside her body.
She had the open form of spina bifida.
Jesse: From the moment you get that diagnosis, walking out of your 20 week anatomy scan, nothing is normal. Pregnancy is the hardest part. Once you know this child, it's like amazing. It's beautiful. But you just have to get through that pregnancy. When we met Dr. Heuer that process got so much easier for us.
Gregory Heuer, MD, PhD: For the first time I met the Kenning family, was before Harper was born. I still remember meeting them and going over what we were seeing on these fetal studies.
Patrick: When you have information like CHOP has, you can understand it's not going to be a diagnosis. It's going to be your child, who might have disabilities in walking or bladder control, but ultimately she's gonna be a normal little girl.
And that's what we see with Harper.
Jesse: For the first time, someone was like, congratulations. She's gonna be a success story and you're gonna be okay. That changed our path forever.
Gregory Heuer, MD, PhD: It gets really important to meet 'em even before the baby's born. That's the beginning of the journey, the beginning of the therapy. Before the babies are born, that spinal cord either didn't form right or it gets damaged.
In cases like Harper, we do the surgery to close things, and then through life we're trying to maintain that function in those nerve roots.
Jesse: I had so much confidence in knowing that Dr. Heuer had, done 700 spina bifida closures. But ultimately it was the character of Dr. Heuer.
Patrick: The character of CHOP as a whole.
Some hospitals, you feel like it's a business. CHOP makes it feel like it's a mission, and everyone is in that mission who's in that building.
Gregory Heuer, MD, PhD: These kids who have a good family and a good support network, do really well. They're not going to wait and hope, they're going to be actively involved in making her the best Harper she can be.
I'm thrilled with how she's doing.
Jesse: She has like the most vibrant laugh that just pulls people in. She loves cooking and her imagination, it's just crazy. Can you help pick me some beads out for Dr. Heurer
Harper: Blue and purple. This bracelet is gonna be amazing.
Patrick: You don't really see kids at three be so inquisitive.
Jesse: It's so fun to just watch her bloom and blossom and become a person.
Patrick: She is very special in the way she can connect with people. Her disability isn't gonna hold her back.
Jesse: As a parent, my goal now is to make spina bifida of the least interesting thing about Harper. I just hope she never loses that light.
Patrick: The world is a better place with Harper in it.
Understanding spina bifida
Spina bifida is the most common permanently disabling birth defect. Very early in pregnancy, the cells that form the spinal cord should close into a tube. In spina bifida, that closure does not happen fully. The nerves at and below the opening can be affected.
Harper has myelomeningocele, the most severe form of spina bifida. A portion of her spinal cord was outside her body when she was born. This can cause paralysis, changes in sensation, challenges with walking, and trouble with bladder and bowel control. Some children grow up walking with braces, walkers or crutches. Others use wheelchairs for longer distances. Many children use a combination of tools to support independence and mobility.
Harper’s parents learned she had spina bifida at her 20-week anatomy scan. It became the hardest day of their lives. They walked in excited to see their baby. They walked out with more questions than answers.
“It was unforgettable,” says Jesse. “Everything changed.”
In the weeks that followed, the Pittsburgh-based couple searched for information and traveled to hospitals in multiple cities. Much of what they heard frightened them. They were told their daughter might never recognize them, might never move, and might live entirely bedridden. They left appointments feeling alone and overwhelmed.
Finding spina bifida experts at CHOP
Their research kept leading them to Children’s Hospital of Philadelphia (CHOP). CHOP has led groundbreaking studies in spina bifida care, including the MOMS trial. They learned CHOP had treated hundreds of babies with the same diagnosis as Harper and had deep expertise built over decades.
Jesse and Patrick decided to travel to Philadelphia to meet with the experts in the Richard D. Wood Jr. Center for Fetal Diagnosis and Treatment (CFDT). In their consult, they met with Dr. Juliana Gebb, a maternal fetal medicine specialist, and pediatric neurosurgeon Dr. Gregory Heuer. They remember the exact scrub cap Dr. Heuer wore and the round table where, for the first time, someone congratulated them on their baby before talking about her diagnosis.
“He was the first person to say this is a normal child who will have challenges walking,” says Jesse. “He told us she would be a success story. It changed our path forever.”
Dr. Heuer evaluated Harper’s fetal MRI and ultrasound. He explained her specific form of spina bifida, what her care would involve, and what he expected her outcomes to be.
“[Their approach] changed everything,” says Jesse. “Our nurses, our doctors, everyone helped us take things one day at a time. It empowered me as a mother to raise Harper with the same mindset.”
Harper was born in CHOP’s Garbose Family Special Delivery Unit in 2022. The day after birth, Dr. Heuer closed her spine. Ten days later, he placed a lifesaving shunt in her brain. Today, he continues to guide her care.
“She is doing great,” he says. “This family is exceptional. They’re actively involved in making her the best Harper she can be.”
Spina bifida management: Growing up at CHOP
The Kennings travel to Philadelphia for Harper’s appointments. They say their CHOP team feels like family. Harper looks for the same people at each visit, including Hannah, who works at the check-in desk at CHOP’s Buerger Center for Advanced Pediatric Care. Hannah also has spina bifida and always checks in on kids who are having surgeries or shunt revisions. Harper gravitates toward her.
“Seeing that light in Hannah gives me so much hope,” says Jesse. “It is what I want for Harper as she grows.”
Research in action: Advancing spina bifida treatments
The family also sees firsthand how CHOP uses advanced research to improve care. During a recent visit, Harper was able to participate in a new gait analysis project led by Dr. Heuer and his colleague, Dr. Adam Kundishora. Using artificial intelligence and simple cameras, the team can study how children walk without needing a traditional lab. This can help determine what braces or therapies may work best. One day, families may be able to record these videos at home and receive personalized insights.
For families who do not live near specialized centers, this type of technology could offer life-changing access.
“Seeing our daughter in the middle of that work was incredible,” says Jesse. “It’s so special to see where the research dollars are going.”
Creating the Harpey K Foundation
As Harper grew, her parents felt grateful for the resources and care surrounding their family. Many families do not have access to multiple opinions or the ability to travel for care. They also saw the major gaps in research for spina bifida. The scientific literature on the many aspects of spina bifida has not changed much in decades.
They decided to act. In 2024, they launched the Harpey K Foundation to support research in spina bifida. Their goal is to help develop new knowledge and new tools that lead to better results for children and adults living with the diagnosis.
“Our mission is really focused on finding areas of research that are under-developed and pushing the status quo,” says Jesse. “It’s about serving the greater good.”
Their first golf event brought together friends, family, colleagues, and corporate supporters. The experience showed Jesse and Patrick how many people wanted to stand beside them.
“People were waiting for a way to support us,” says Jesse. “Nobody said no.”
Their second annual event builds on stronger knowledge of the research, new partnerships and more families reaching out for connection. They hope their work will help families receive better information at diagnosis, better tools throughout childhood, and better support during adulthood.
Looking ahead
Harper is thriving. She talks nonstop, observes everything around her, and brings joy wherever she goes. Her parents want her to grow up knowing her diagnosis is only one part of her story.
“Our hope is that she never loses her light,” says Jesse.
“She's an amazing girl,” adds Patrick. “Super smart, super intelligent, intuitive in people's emotions. She is very special in the way she can connect with people.”
They also want other families to know they are not alone. They remember how isolating those first days felt and how far they have come.
“You are more capable than you think,” says Jesse.
For the Kennings, CHOP has been a partner throughout this journey.
“CHOP makes it feel like a mission,” says Patrick. “Everyone here wants to make families’ lives better.”
Where to start when you learn your unborn baby has spina bifida
Getting a spina bifida diagnosis during pregnancy — or finding out anything is wrong with your baby — can be devastating. You are not alone. This article can help you wade through questions and concerns you may have and provide guidance on where to go from here.