Creek Case Is 5 Months Old and Has Spent Nearly His Whole Life in the Hospital. His First Stay at Home Lasted Six Days.
Creek Case is 5 months old, and nearly all of those months have been spent in a hospital. His one stay at home so far lasted six days. On Saturday, Nov. 21, his community in Cassadaga, New York, will hold a benefit at the Falconer Moose Lodge to help his family with the costs of a medical journey that is far from over, according to the Observer.
Creek was born with heart defects and was diagnosed with VACTERL syndrome, and he now breathes with the help of a tracheostomy and a ventilator.
Heart Surgery the Day After Birth
His parents, Micheala Kubera and Ryan Case, learned about the heart defects when she was about 16 weeks pregnant, the Observer reported. Creek had heart surgery one day after he was born.
The problems did not stop with his heart. A bowel obstruction led to a colostomy bag and a feeding tube known as a G-tube. About a week after birth, he was diagnosed with VACTERL syndrome, which the Observer describes as a rare association of birth defects that can affect many parts of the body.
About a month after birth, while Creek was in the NICU, surgeons repaired a tracheoesophageal fistula. His esophagus and trachea had not separated properly, so he could not eat by mouth or swallow his own saliva.
Six Days at Home, Then a Drive to Rochester
When Creek finally went home, the stay lasted six days. His breathing slowed, and UPMC Chautauqua transferred him to Strong Memorial Hospital in Rochester, more than two hours away.
An echocardiogram there found pulmonary stenosis. Surgeons removed tissue that was blocking his pulmonary artery. He still has a large hole in his heart and will need another heart surgery in the future, the family says, but he is currently stable.
After that operation, doctors found narrowing in his left lung. Creek received a tracheostomy, a breathing tube placed through the neck, and now relies on a ventilator.
Learning to Run a Ventilator at Home
The Observer reported that his parents learned to manage the trach and ventilator themselves. The family became a one-income household so his mother could stay with him and learn his care.
Children’s Wisconsin, a children’s hospital, describes how much that learning involves. Its page on tracheostomy care lists bedside training with nurses and respiratory therapists, classroom sessions, practice with simulations and “rooming in” days of independent care before discharge. Caregivers also learn the home suction machine, oxygen setup, humidifier and ventilator. “Learning to care for a child with a tracheostomy and home ventilator is a journey,” the hospital says.
The months ahead for the Case family will include nursing help, medical appointments and health monitoring, the Observer said, along with the gas, travel and missed work that come with frequent hospital trips.
His mother described the toll in plain terms, saying the family had watched their baby turn blue and drop in oxygen levels more times than anyone should. His father said that having Creek spend almost his entire life in the hospital has been one of the hardest things.
What VACTERL, a Fistula and Pulmonary Stenosis Mean
MedlinePlus Genetics, a service of the National Library of Medicine, says VACTERL association stands for vertebral defects, anal atresia, cardiac defects, tracheo-esophageal fistula, renal anomalies and limb abnormalities. People usually have at least three of those features. It occurs in about 1 in 10,000 to 40,000 newborns. Heart defects occur in 40% to 80% of cases and tracheo-esophageal fistula in 50% to 80%, MedlinePlus says, and the cause is still being studied.
The NIH’s Genetic and Rare Diseases Information Center says some features are subtle and may not be found until later childhood or adulthood, and it suggests a care team that can include a primary care provider, gastroenterologist, geneticist and nephrologist. The center lists the condition as VATER association, another name for VACTERL.
The Children’s Hospital of Philadelphia says esophageal atresia and tracheoesophageal fistula are rare conditions that form before birth and must be treated shortly after birth. Babies with the esophageal form cannot swallow milk or their own saliva, so they are not fed by mouth before surgery. CHOP adds that around half of babies with these conditions have other health concerns.
Nationwide Children’s Hospital describes pulmonary stenosis as a heart defect that makes it hard for blood to flow from the right ventricle to the lungs. Severe cases can be treated with a balloon procedure or open-heart surgery, it says, and if the stenosis worsens, more surgery may be needed. Pediatric cardiologists keep following the child’s heart after discharge.
Parent Diaries has also reported on twins Tilly and Coen, one of whom had a heart defect found at a 20-week scan.
The Benefit at the Falconer Moose Lodge
The benefit runs Saturday, Nov. 21, from 1 to 7 p.m. Ticket and donation information is on the Case family website and on the Facebook event page called “Case family benefit,” the Observer said, though the article does not print the addresses.
Donations of baskets, gift cards, raffle items and food have already come in, and volunteers are giving their time. The money is meant to offset gas, travel, missed work, the strain of living on one income, heart-condition costs and breathing equipment.
Creek’s mother said the family is not used to asking for help, and that having Cassadaga and the surrounding communities rally behind them has been especially meaningful. His father’s biggest hope is that Creek gets the chance to “just be a little boy.” “Creek Strong isn’t just a saying; it’s who he is,” his mother said.
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This article was produced with AI assistance and edited for accuracy against the sources linked above.
Image: Peter K Burian – CC BY-SA 4.0/Wikimedia Commons
