Henry’s mother Leticia was at a routine 20-week ultrasound when her obstetrician informed her that she had abnormally low amount of amniotic fluid, and that her growing baby’s kidneys and bladder were significantly inflamed. She was quickly referred from her doctor’s office in Carbondale, IL to the St. Louis Fetal Care Institute at SSM Health Cardinal Glennon Children’s Hospital.
Leticia delivered Henry on March 4, 2017. SLUCare Neonatologist Dr. Farouk Sadiq and SLUCare Nephrologist Dr. Craig Belsha were two of Henry’s significant caregivers handling the task of figuring out Henry’s next steps. “They diagnosed him with end stage renal disease, and told me he needed to start dialysis with an eventual kidney transplant,” said Leticia.
Henry began his dialysis treatments at four weeks old, had both kidneys removed at five months old, and continued peritoneal dialysis for the next several months. Leticia made her home in the NICU while her other daughter, then two years old, remained back home with extended family. “The social workers and Footprints team have been an incredible support to me. They provided gas cards, grocery cards, and things that made it possible for me to keep going,” Leticia says. At nine months of age, complications with Henry’s peritoneal catheter made the plan for eventual home dialysis no longer possible. New hemodialysis treatments would require Henry to be at the hospital for dialysis four days a week for five hours each day, and travel back and forth from Carbondale to St. Louis would not be manageable over any significant length of time. Leticia left her full time job and relocated to St. Louis, quickly depleting her savings.
Henry was finally discharged after nine months in the hospital and they have been living at the Ronald McDonald house since then. On top of Henry’s multiple dialysis treatments every week, he also has appointments with multiple subspecialty services like Endocrinology, Immunology, Urology, General Surgery, Cardiology, Ophthalmology, Physical Therapy, Speech Therapy and the Complex Medical Care Team. “The plan now is to strengthen Henry’s immune system and eventually be listed for a kidney transplant,” says Leticia. “He’s such a happy little guy despite all he’s been through.”
“I never expected that I would face life having to choose whether to put food on the table or buy medicine for my child. Or, pay for a utility bill vs. afford gas to get back and forth from the hospital. It’s really devastating and a huge worry on top of what’s going on with your child,” says Leticia. “The staff here have gone to bat for us…helping us with food, diapers, housing, Social Security and Disability…all things that have kept us afloat. No one tells you how you will get back to a ‘normal’ life after you go through all of this. But for now I am just so grateful he’s a happy boy, and for the support we’ve received that is made possible from the generosity of so many others.”