As part of Riley’s cardiology home-monitoring program, 5-month-old Adriel Hernandez is able to be home with his family while a care team follows his progress virtually.
By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org
Adriel Hernandez had a rocky start to life.
Before he entered the world, doctors told his parents, Josue and Glenda Hernandez, that their unborn child had a serious heart defect that could require multiple surgeries to fully repair.
Glenda tried not to let that news weigh her down as she continued with her pregnancy. She knew she had to be strong for her two older children, and she wanted their holidays to be extra special because once Adriel was born, he would need to be hospitalized for several weeks.
Adriel was born at IU Health Methodist Hospital on Jan. 4 and was quickly transferred to Riley Hospital for Children at IU Health, while his mom stayed behind at Methodist recovering. (When the new Mother-Baby Tower at Riley opens later this year, that difficult mother-baby separation between hospitals will no longer be necessary.)
Five months later, Adriel is home and doing well, even if he is on the small side at 12½ pounds.
Turns out the preterm diagnosis of hypoplastic left heart syndrome, where the left side of the heart is critically underdeveloped and can’t pump blood effectively to the body, wasn’t entirely correct.
Riley heart surgeon Dr. Mark Turrentine discovered in surgery when Adriel was a week old that one of the infant’s two ventricles could be repaired to improve blood flow. Babies born with HLHS typically have only one working ventricle.
“When they took him back for surgery, the plan was to do the Norwood procedure,” Glenda said, which involves building a new aorta (the main path from the heart to the body), forcing the right ventricle to pump blood to the body through the new aorta.
“When they opened his chest, they realized the right side of his heart was working a little better than they were expecting.”
The surgical team was able to open up his existing aorta a little wider to get blood flowing better and close an opening between the two major blood vessels leading from the heart.
Adriel went home to Nappanee, Indiana, a month after his birth, but the Hernandez family hasn’t been on its own the past four months. They are part of Riley’s Department of Pediatric Cardiology home-monitoring program, headed by nurse practitioner Dana Hartman.
Adriel is one of 17 heart babies currently being monitored in the program, Hartman said. Typically, single-ventricle babies treated at Riley are enrolled in the program, which monitors a child’s oxygen levels, weight and other vital signs via an iPad and connects parents with a nurse – in this case, Hartman – who helps troubleshoot concerns.
While he has two working ventricles, Adriel was considered fragile as doctors were concerned about the squeeze of his heart. The peace of mind his parents feel by having Hartman a phone call away can’t be overstated.
“The home monitor program really has been a lifesaver because I do feel secure,” Glenda said. “I feel like I have the Riley team in my back pocket.”
She acknowledges being nervous at first, but as she has gotten to know her son and his needs better, it has gotten easier.
She describes 5-month-old Adriel as a happy baby who is pretty chill until he gets hungry. Unlike a lot of babies with serious heart ailments, Adriel takes all of his nutrition orally; he doesn’t require a feeding tube.
That’s one of the reasons Hartman keeps close tabs on his calorie intake and weight gain. She wants to make sure his weak heart isn’t compromising his growth. It’s unclear yet if he will require another surgery, but it remains a possibility.
“His growth is a little slower than we like, so we want to make sure he’s out of the woods,” Hartman said. “But he’s getting close to graduating out. He’ll tell us basically when he doesn’t need us anymore.”
Meantime, she speaks with Glenda regularly and makes sure that she and all of her parents in the program know that she is a phone call away. That means the world to Adriel’s mom.
“We absolutely love Dana! She is amazing!”
Adriel was in to see his cardiologist, Dr. John Parent, in April and returns for a follow-up later this month. The physician reported a slight improvement in his Echo, which was a relief to his parents.
“We are still not out of the woods,” Glenda said, “but we are headed in the right direction.”
Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org
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