SSM Health Cardinal Glennon Children’s Hospital has been the family’s second home since D.J. was born with a number of issues, including a cerebral hemorrhage, a perforated anus and scoliosis. His right leg ended below the knee. His major diagnosis was caudal regression syndrome — abnormal fetal development of the lower spine, which occurs once in 25,000 births.
“He has at least seven specialists here,” his mother Andrea says. “We were in the Neonatal Intensive Care Unit for three months. All of our doctors are little angels. The nurses will go the extra mile to make sure your baby is comfortable and they take care of you as well.”
For two years, D.J. has been visiting the hospital Monday, Wednesday and Friday mornings for kidney dialysis. “This is his life,” his mother says. “He has no kidneys. He will need a kidney transplant but he is not listed yet.” "D.J. is one of 15 or 16 patients who visit the dialysis unit regularly, usually three days a week," says Lynn Yates, RN, unit coordinator. “Our goal is to get them to transplant, which usually takes a year and a half to two years. We develop relationships with our families that are very deep and special. The relationships really don’t end after they go on to transplant.”
D.J.’s anomalies were diagnosed 31 weeks into pregnancy. “It was overwhelming. I didn’t know what to expect and I didn’t know how we were going to adapt to this,” Andrea says. “More importantly, we didn’t know how we were going to live our lives and give him a good quality of life. It was emotional and stressful, but by the grace of God, he made it. If it wasn’t for Cardinal Glennon, I don’t believe he’d be alive today. They’re not only good healers, but they’re good at keeping a family upbeat and together.” Ronald Adams, D.J.’s dad, agrees. “We go through a lot with him but we know we could’ve seen much worse. I thank God and Cardinal Glennon for helping him so it isn’t as bad as we thought it would be.”
Despite all the odds he has faced, his mom says, D.J. loves his life, his friends and his school, Dunbar Elementary in East St. Louis, Ill. “God gave him to us. We didn’t think we could handle it but we’re handling it well. Everything he does is normal to us. He likes being around other children. He likes school work,” she says. “He knows he’s different. We try to do our best, without getting too emotional, to explain what he is going through and why. We try not to shelter him. We let him live normally and do what other kids do. He likes to have fun. He likes to play video games. When other kids are around he is playing with them.”
"Other kids can be curious about his prosthetic leg," Ronald adds. “Sometimes he wishes he didn’t have it, but they’re kids so there really isn’t anything you can say. But he’s popular and the whole school loves him.”
D.J. also is popular at his hospital. Susan Fleming, RN, and Francine Graham, RN, have been his dialysis nurses throughout his treatment. “Our kids worry about our nurses sometimes,” Yates says. “I have seen D.J. ask his nurse if she was doing okay when he thought she wasn’t feeling well.” “This is our second family,” Andrea says. “They saved our baby. They mean everything to us.”
“I support Cardinal Glennon because I feel that without them, we would not have our D.J. with us today. The quality of care, the concern that each and every staff member shows, and all of the support...it’s truly a Glennon experience,” Andrea says. “I thank God for Cardinal Glennon.”