Down Syndrome

SSM Health Cardinal Glennon Children’s Hospital

Walker's Story

At the beginning of Walker’s mom’s pregnancy, it was determined Walker had a congenital heart defect. Walker’s mom would need to travel from her home in southern Illinois to be seen at the SSM Health Cardinal Glennon St. Louis Fetal Care Institute. After further testing, it was discovered that Walker would be born with Down syndrome, also known as Trisomy 21, a genetic disorder causing developmental and intellectual delays.

As Walker’s mom’s scheduled induction approached, she prepared her family for an extended hospital stay. Everything went smoothly with Walker’s birth. Walker’s parents were able to spend about 10 minutes with him before he was taken to the NICU.

Walker was doing great, eating well, and gaining weight, but he wouldn’t urinate. With concerns about his kidney function and lack of urination, Walker’s doctors decided an additional NICU stay was needed. While he was eventually discharged with instructions to follow up with a urologist, Walker’s mom noticed a mysterious brown mucus in his urine and rushed him back to the ER. Walker’s local pediatrician placed a catheter in the one-month-old. Walker would need to be cath’d every three hours.

At two months, Walker underwent a procedure to release his lip and tongue tie to help with weight gain, and another to open his urethra more. Walker was discharged within 24 hours and was “peeing like a champ,” according to his mom. Walker eventually underwent a successful vesicostomy to drain his urine in March 2022.

Walker was scheduled to have open-heart surgery on April 18th however, he went into heart failure the week prior. He was rushed by ambulance to Cardinal Glennon and had his repair on April 15th. “It was the scariest thing I have ever been through in my life,” recalls Walker’s mom. “But, on day five our little warrior was discharged from the ICU & got to come home. He is healthy, thriving & doing amazing since having his heart fixed.”

Walker’s parents are looking forward to giving Walker the best life and showing people in their community just how much is possible for a baby born with Down syndrome. Walker has started physical and occupational therapy. He will work with the team at Cardinal Glennon to determine what other interventions are necessary as he gets older.

How CMN funds help Walker and kids like him:

Walker has been fortunate to have access to the Dana Brown Neonatal Intensive Care Unit, which was renovated in part by money raised through Children’s Miracle Network Hospitals of Greater St. Louis. The NICU is a level IV, 60 bed state-of-the-art unit that provides private rooms for babies and parents.