Every day, children’s hospitals help make moments possible. From providing access to the comprehensive care that children need to grow up to supporting children, teens, and their families with specialized treatment for some of the most complex illnesses. Discover more about the moments made possible by children’s hospital through patient stories from around the country.
Defying the odds after Down Syndrome diagnosis, heart surgery
Two days after Kitson was born, doctors discovered an open atrioventricular canal in her heart—a familiar yet frightening condition that commonly impacts infants with Down Syndrome. Filled with confusion and fear, Kitson’s family found themselves at Cook Children’s Health Care System in Fort Worth five months later, where the Cardiac Intensive Care team met them with open arms. As they operated on her for several hours, the team went the extra mile to comfort Kitson’s family as they paced the hospital awaiting news. But after a successful surgery, she quickly developed pulmonary hypertension. The care team returned to the drawing board, carefully tailoring a treatment plan that helped her lungs become strong again. Throughout Kitson’s journey, the staff never hesitated to make her family feel loved and encouraged, providing a circle of support when they needed it most. Kitson is now back home in New Mexico, a happy and spunky baby. The team at Cook Children’s continues to offer guidance from afar and will forever hold a special place in the Bell family’s hearts.
Hayden’s journey from a challenging birth to boundless play
As Sara and Dan awaited the delivery of their first child, Hayden, an update from the Doctor brought a sudden turn of events. Their anticipated 7-pound baby would enter the world at 9 pounds. When babies like Hayden are bigger, they pose more challenges during labor and are at higher risk of developing brachial plexus birth palsy – a condition when the nerves from the neck down to the arm and hands can become injured during birth. At Hayden’s two-month check-in, he was diagnosed with brachial plexus birth palsy and began daily physical therapy at the UPMC Children’s Hospital of Pittsburgh’s Brachial Plexus Clinic. As he made notable progress at physical therapy, he hadn’t entirely regained full range of motion, and doctors decided surgery would be the next best step. Hayden championed his 6-hour reconstructive surgery and attended routine check-ups over the next year. After an incredible recovery, 3-year-old Hayden is no longer limited by functional issues and enjoys climbing, swinging, and playing outside!
Pediatric nursing team brings relief to Regan
By the time Regan was six years old, he had already undergone four open heart surgeries and one heart transplant. Because of these surgeries, Regan now has to get blood drawn for lab tests regularly. But with his numerous medications and all the blood draws he’s had over the years; his veins can be tricky to access. The draw station he was frequenting experienced staff transitions, and the newer nurses, unfamiliar with Regan’s complexities, often accidentally poked him and wore out his veins trying to draw blood. With his complexities, his family quickly reached out to MercyOne Children’s Hospital and was met with specialized pediatric nursing staff who could efficiently draw Regan’s blood and send it over to his physician. Now, Regan routinely visits his care team at MercyOne Children’s Hospital, where he gets his labs drawn as necessary without any anxiety.
A patient’s care team inspires him to become a healthcare professional
When a young boy was diagnosed with an optic glioma brain tumor, he and his family uprooted their life in Tehran, Iran, traveling 6,000 miles to Seattle Children’s Hospital. Once he arrived at the hospital, he found a specialized team who understood his condition and could offer the chemotherapy and radiation he needed. After nearly four years of treatment, he continued to attend routine endocrinology appointments and receive MRIs to ensure the tumor was stable. During all these years spent frequenting the hospital, he formed long-lasting bonds with the staff who offered him love and support throughout his journey. Especially as he balanced his health battle with living in a new country and learning a new language, his care team became a second family, ultimately inspiring him to follow in their footsteps. Today, he’s a healthcare professional at Seattle Children’s and spends his time uplifting patients and families in the same way his team did for him.
Unique program helps medically complex children excel
Rowan Humphrey is almost two years old and works hard every day to master a skill that might not come as easily for him due to muscular dystrophy, a disease that causes weakness and degeneration of skeletal muscles. But because of KidStreet, a half-day therapeutic program delivered by Children’s Hospital Colorado, Rowan is learning new things every day. He works with occupational, physical and speech and language therapists, medical assistants, music and art teachers, care coordinators, nurses and clinical nurse specialists, mental health consultants, early child educators, and more – and gets to socialize with other children his age. The care team at KidStreet has given Rowan, who is nonverbal, a voice by working with him to use eye gaze technology to communicate. Through this work, Rowan is learning new ways to interact with those around him, allowing his world to expand and his impact on that world to grow. KidStreet is funded by Medicaid, which makes this outpatient therapy option for children with medically complex conditions more accessible and affordable.
Triple organ transplant gives teen her life back
Diana was born with pseudo-obstruction syndrome, a chronic condition that prevents muscles in the intestines from contracting normally. At only four years old, Diana received her first intestinal transplant at Stanford Children’s Health. While the transplant performed well for years, she eventually developed a severe rejection of her graft, which ultimately led to the removal of her intestines. For the following five years, Diana could not eat or drink independently and lived on parenteral nutrition (TPN) – an IV delivering liquid nutrients to her body. When she turned 16, she decided she wanted a better life. Diana received a successful multiorgan transplant of a liver, pancreas, and intestines. Today, Diana has no signs of organ rejection and spends her time enjoying life as a teen and is back to eating her favorite foods. Diana plans to attend nursing school so she can one day work in pediatric care.
A new heart means a new lease on life
Adam was born with a rare heart defect, one that typically requires a few surgeries to correct. Due to a continued weakening of his heart and a clotting complication, Adam didn’t just need reparative surgery, he needed a transplant. Because of his heart condition, Adam had spent much of his short life in the hospital. Through all his ups and downs, he maintained his silly demeanor – making those around him laugh. Adam and his family had to be cautious about infection prevention during the wait for a heart because even a cold or minor illness could delay the surgery. After a five-month wait, the team at Yale New Haven Children’s Hospital got the perfect heart for Adam. He had a successful transplant and was able to go home three weeks later. Almost three years old now, he loves playing with cars and keeping up with his older brothers.