Our Stories

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.

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Growing stronger every day with his specialized care team

Shortly after Ernesto’s premature birth, nurses discovered he had cerebral palsy, a condition that affects movement, muscles, and posture. When Ernesto was six months old, his mother, Dalia, brought him to Gillette Children’s Cerebral Palsy Institute, one of the world’s top innovators in clinical care and research for patients like Ernesto. Here, he received an Infant and Toddler Development Evaluation to determine the best comprehensive treatment plan for his unique needs. As experts formed his treatment plan, the team outlined every medical service for Dalia, making her feel prepared and at ease. Now, at two years old, Ernesto regularly meets with an occupational therapist, physical therapist, and rehabilitation medicine physician. He continues to get stronger and exceed expectations. His therapists and physicians say he’s a delightful and social boy who works hard to improve his abilities. Today, Ernesto can be found zooming around on his gait trainer in the hospital’s therapy gym alongside his physical therapist. Dalia is excited to continue watching him grow and thrive with help from this team at Gillette Children’s. 

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An innovative approach to kidney transplants helps children with immune diseases

Physicians at Stanford Medicine developed an innovative way to provide pediatric kidney transplants without immune-suppressing drugs. This two-transplant combination is called a dual immune/solid organ transplant (DISOT) and has been used to treat patients with rare immune diseases. This new transplant method ensures that recipients do not experience immune rejection of their transplanted organ, helping facilitate successful transplants for 8-year-old Kruz and his 7-year-old sister Paizlee. Both children were born with rare immune diseases and are among the first ever to receive DISOT. Kruz received transplants from their mother, Jessica, and Paizlee received transplants from their father, Kyle. Since the transplants, both children no longer have the immune disorder and are doing things they never thought to be possible. The siblings recently finished first grade, and they are enjoying swimming lessons and going camping with their parents!

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Cameron receives the world’s smallest pacemaker

When pregnant mom, Shakiara, learned that her lupus placed her unborn child at a higher risk of congenital complete heart block, she began to receive weekly fetal checks with her care team. Her baby, Cameron, presented well until 21 weeks, when the exam indicated signs of heart block and within hours, Shakiara was seen in the Fetal Heart Program at Children’s Hospital of Philadelphia (CHOP). In most cases, children born with heart block will eventually require a pacemaker. In addition to heart block, Cameron was also born with pulmonary hypertension and abnormally rapid breathing that can make it unsafe for infants to feed orally. When Cameron’s breathing and feeding issues failed to progress, his care team agreed that a pacemaker was the right approach. Because the average pacemaker is too large for small infants, Cameron was set to receive the Medtronic Micra, the smallest available pacemaker in the world. Surgeons were able to insert this tiny pacemaker through a tiny incision, enabling Cameron to recover faster. Shakiara says from the first sign of heart block to Cameron’s successful surgery, the entire team at CHOP was there to support her and answer all her questions. Now, Cameron is home and on the road to recovery.

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Family travels cross-country for life-changing care

Ester and her husband Samuel were eagerly waiting to discover their baby’s gender when the ultrasound revealed that their baby boy had spina bifida, a condition that prevents the spine from developing correctly. The couple was connected with Timothy M. Crombleholme, MD, Fetal Surgeon at Connecticut Children’s who could perform an in-utero surgery to help correct the condition and give their son a better chance at a healthier life. Ester decided she wanted to proceed, so she, Samuel, and their daughter Rebecca traveled from their home in Oregon to Connecticut for the surgery. The surgery went well, but a few weeks later, Ester returned to the hospital with severe bleeding; it turned out she was going into labor early and had to have a C-section. Immediately after birth, their newborn, Thaddeus, went straight to the NICU. At first, Thaddeus had no movement in his legs, but after a few weeks in the NICU, he could move around and showed signs of significant improvement. Today, the family is back in Oregon and is grateful for the care they received. 

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Leo’s remarkable recovery

Because of a rare condition called Ebstein’s anomaly, Leo was born with a malfunctioning heart. His mother, Jessica, spent the first few weeks of his life consulting with physicians across the country, with some telling her there was no solution. Refusing to accept this answer Jessica kept searching, and soon arrived at Le Bonheur Children’s Hospital with 7-week-old Leo. Here, a cardiologist discovered a rare issue on top of his Ebstein’s anomaly. In most cases, the right side of the heart doesn’t function, but the left side works and supports the right. However, in Leo’s situation, neither side was fully functioning because of a large hole on the left side of his heart. The hospital’s surgical team performed a complex surgery to close the hole and restore function on the right side of the heart. Leo had a remarkable recovery and was discharged from the hospital less than two weeks after surgery.Today, Leo is healthy and happy, with his heart functioning in a normal range. Cardiologists will continue to monitor his heart, but he will most likely never need heart surgery again.  

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Miracle twins with rare heart defects go home healthy

From a young age, Tracey knew her very rare congenital heart condition would prevent her from safely giving birth. However, she aspired to be a mother, and through in vitro fertilization (IVF) treatment, a gestational surrogate was able to carry her twins. The twins were at high risk of developing heart defects because of Tracey’s condition, and a 12-week ultrasound revealed that both twins, Riley and Emery, would be born with congenital heart defects. Immediately after they were born, the twins were rushed to the Cardiovascular Intensive Care Unit at Wolfson Children’s Hospital, where they received different procedures to support their unique heart conditions. Doctors determined that Riley would need heart surgery in the near future, and Emery would require surgery or catheterization once she’s four or five years old. The twins soon began recovering from their initial treatments and were able to go home just in time for a family Thanksgiving! Experts at Wolfson will continue to provide care as Riley and Emery grow up, ensuring they live vibrant and happy lives. 

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A school’s mental health program helps Christian face grief

Christian had just turned two when his mother tragically passed away from years of battling with drug addiction. His grandmother, Donna, immediately became his guardian and felt helpless watching him struggle to process his grief, which led to trouble eating and even speaking. Once Christian started first grade, he began having traumatic flashbacks of his mother’s death and was having trouble managing those intense emotions. Donna knew Christian needed mental health counseling, but the high cost, months-long wait times, and far distances to care centers made it challenging to access the services he needed. Fortunately, Christian’s school has a school-based health center through Nemours Children’s Health, allowing him to talk to a therapist down the hall from his classroom. This program brought peace of mind to Donna and helped her understand Christian’s grief. It’s important to remember that grief often comes in waves, and people process it in their own unique ways. Programs like Nemours’ clinic break down barriers to mental health care access, ensuring kids receive the care they need to process new emotions and life events. 

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