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At 12 years old, Brayden Knapp is exactly where any parent would want their child to be. The outgoing New Jersey boy is described by his teachers as respectful and well-liked. He plays travel hockey and baseball, splashes at water parks with friends, and is looking forward to sixth grade.
But Brayden's life began with one of the most complex pediatric neurosurgical challenges a family can face: a diagnosis at birth of three complex conditions requiring expert care and multiple surgeries.
Today, a decade later, his story stands as a testament to the power of specialized pediatric neurosurgery, unwavering family support and the remarkable resilience of children.
When Brayden was born, a nurse immediately noticed something concerning. "She said his head was not measuring normally," recalls his mother, Kristen. Further evaluation revealed a trio of serious conditions: hydrocephalus, Chiari malformation, and craniosynostosis.
"When he was born, his skull was closed," Kristen explains. "His sutures had closed, so there was no room for his brain to grow. It had to be reconstructed to allow for brain development."
To make matters worse, excessive cerebrospinal fluid wasn't draining properly due to the hydrocephalus, and the Chiari malformation affected the back of his brain and spinal cord.
For parents Kristen and Ryan, the diagnosis was overwhelming. "It was scary at first. We didn't know what to expect," says Kristen. "The biggest struggle was that it was out of our hands. There was nothing we could do to make it better."
Thankfully, the family found a crucial connection to provide help. Brayden's father, Ryan, plays hockey with Dr. David Wells-Roth, a neurosurgeon who directed the family to Dr. Mark Souweidane at Weill Cornell Medicine. When they called Dr. Wells-Roth for advice about their newborn's conditions, he immediately turned to Dr. Souweidane, director of pediatric neurological surgery at Weill Cornell Medicine and NewYork-Presbyterian,to discuss the case.
"From the first appointment, he was very reassuring and compassionate," Ryan remembers of that initial consultation when Brayden was just 2 months old. "He put all our worries at ease. It was second nature to him." Dr. Souweidane's personable, comforting approach made all the difference for the anxious parents.
The treatment plan required multiple surgeries, starting with the most complex. At two months old, Brayden underwent a seven-hour cranial vault reconstruction for his muti-suture craniosynostosis.
"The first surgery was the hardest because he was in there for so long," Kristen recalls. "When we dropped him off for anesthesiology, it was the worst feeling of my life. I was scared and prayed everything would work out, and thank God it did."
The surgical team provided regular updates throughout the procedure, and friends and family surrounded the family in the waiting room. "We didn't leave his side from the minute he was there. We would take turns around the clock, just holding him. Each day he just got stronger."
A year later, Brayden returned for treatment of his hydrocephalus. Dr. Souweidane first attempted a less invasive endoscopic third ventriculostomy (ETV). Still, when that didn't provide adequate drainage, they proceeded with a shunt placement—a tube that drains excess fluid from the brain to the abdomen.
Around age three, Brayden had decompression surgery for his Chiari malformation, completing the trilogy of procedures needed to address all his conditions.
Throughout the journey, the family found strength not only in expert medical care, but also in the support of their community. They joined Cranio Care Bears, a Facebook support group started by two mothers whose children had craniosynostosis.
"It helped to talk to family and friends, but they didn't know exactly what we were going through," Ryan explains. "The group was started by two moms whose kids had craniosynostosis. They created the group to help parents and kids going through it and to spread awareness."
Brayden's recovery involved speech and physical therapy, and each milestone carried extra significance. "Each milestone meant so much more than what he accomplished," Ryan reflects. "The journey hasn't been easy. Lots of long hospital stays, but seeing where he is now has brought so much joy throughout the years."
The transformation has been remarkable. "He's not just thriving. He’s doing things we didn't think he would ever do at the time. He has lots of friends and is doing well in school."
No single element captures Brayden's journey better than the annual photo tradition that began during his first surgery. "When he first had the surgery, he was in a Superman onesie," Kristen remembers. "After each appointment with Dr. Souweidane, we took a photo of them."
What started as a simple documentation became a cherished tradition that tells the story of a decade of growth. "We have a book of photos of Brayden and just decided to keep taking photos of them. He turned 12 in October, so it's nice to see how far he's come."
The evolution captured in these photos is profound. "When you look back at everything that we went through in the beginning, it's a story about Brayden's journey and what he's gone through. When you look at the photos, he's so small and then in the more recent photos they're together smiling and laughing."
For Brayden, the annual visits have become celebrations rather than medical necessities. "Brayden says Dr. Souweidane makes him laugh," Ryan shares. "His excitement and comfort is a reflection of the care that Dr. Souweidane provides to his patients."
The long-term relationship with Dr. Souweidane has provided the family with immeasurable relief. "It's comforting to be with the same doctor since he was born," Kristen explains. "He knows his journey and everything that he's been through. We have a lot of trust with him."
The annual follow-ups, which include X-rays and occasional MRIs to ensure proper growth and shunt function, have transformed from anxiety-provoking medical appointments to celebrations of progress. "Now it's a relief going to his appointments. It's a celebration of how great he's doing."
The experience has profoundly shaped the entire family. Ryan, a firefighter, has gained perspective on what truly matters. "A lot of people complain about a lot of things that aren't worth complaining about. This experience has brought us closer. We don't take everything for granted in life," Ryan reflects.
As Brayden enters adolescence and begins asking questions about his surgeries and scars, the family sees continued strength building. "He's asking questions now. 'Oh, I had surgery. What happened?' He's noticing his scars and knows how to explain it to friends. It's only going to make him stronger in life and let him know that there isn't anything he can't do."
Kristen's advice to parents facing a frightful diagnosis, be it craniosynostosis or a host of others, comes from a place of hard-won wisdom: "They are not alone. It's scary starting off. Trust in your child's strength. Lean on the medical team, ask questions, and do all in your power to seek out experienced care providers. Understand what's going on. Talk to parents in support groups who have experienced this. Celebrate every milestone."
She emphasizes the importance of perspective during the darkest moments. "In the beginning, we felt so helpless. We didn't know what was going on. There is a lot of uncertainty. People automatically think the worst thing. The bottom line is to sit back and trust the people who know what they are doing. There is light at the end of the tunnel."
Today, as Brayden prepares to enter sixth grade, his parents marvel at the active, social child he's become. "As a parent, you want what's best for your child. He's overly nice to everyone. I'm looking forward to seeing what he does in life. He loves so many different things. He has a ton of friends. Everyone talks to us about how great a kid he is."
The family’s gratitude toward Dr. Souweidane and the entire team at Weill Cornell Medicine remains profound. Over a decade has passed and Dr. Souweidane and his team are as invested in Brayden’s wellbeing today as they were on the day we met him. "We as a family couldn't thank him enough. We didn't know what to expect. He saved my son's life and saved his way of living," Kristen says. "Not just as a doctor, but as a person. He's made this process so easy and comforting for us during the scariest time of our life."
Brayden's story, captured in nearly a decade of photos with his surgeon, demonstrates how expert pediatric neurosurgical care can transform not only medical outcomes but also entire family trajectories. From a newborn in a Superman onesie facing multiple life-threatening conditions to a thriving 11-year-old athlete, his journey embodies the resilience of children and the profound impact of specialized, compassionate medical care.
"Have faith in your child,” Kristen says. “They are more resilient than we can imagine. Have hope and courage that they will get through this. Trust in your child's strength."
Dr. Mark Souweidane is a pediatric neurosurgeon at Weill Cornell Medicine specializing in complex pediatric brain conditions including craniosynostosis. To learn more about craniosynostosis treatment and pediatric neurosurgery, visit neurosurgery.weillcornell.org.
