By Maureen Gilmer, IU Health senior writer, firstname.lastname@example.org
They’ve been here before.
Spending long days and nights at Riley Hospital for Children, waiting for answers, for good news, for the time when doctors say they can take their little boy home.
Brian and Mallory Aylor are back at Riley with their son, Junior. And once again, they are praying for a miracle.
A miracle in the form of a heart.
Last year, Junior received a donor heart just before his first birthday. Diagnosed with multiple serious heart defects before birth, including hypoplastic right heart syndrome, tricuspid atresia and transposition of the great arteries, he was a warrior from the beginning.
He spent more than half of his first year of life at Riley but went home healthy and happy just weeks after his heart transplant in May 2021.
It was a joyous celebration, coinciding with his first birthday and the start of the southern Indiana family’s new normal.
“He did amazing after he got this heart,” said his mom from his bedside Monday.
For one year and three weeks, he did amazing.
As happens with organ transplants sometimes, Junior’s donor heart began showing signs of rejection at the end of May 2022.
He has been back at Riley for nine weeks now, marking his second birthday in the hospital, as doctors tried to strengthen his hero heart. But on July 26, the decision was made to place Junior back on the transplant list.
“He just can’t function at the level he needs to with this heart,” Mallory said.
Junior’s blood type is 0 negative, which makes him harder to match, his mom said, and the transplant team will need to be “really picky” with a second donor heart after his body rejected this one.
To buy time, surgeons will take Junior back to the operating room Thursday to implant a ventricular assist device (also known as a Berlin Heart) to manage his condition until a new heart is secured.
The little boy with the big brown eyes doesn’t really understand any of this, of course. He just knows that he’s not home with his big sister, and he can’t run and play for now.
Junior gets physical and occupational therapy six times a week to try to restore the muscle mass he has lost since re-entering the hospital. His head control is improving, and he is trying to sit up without assistance.
“We’re hitting all the milestones all over again,” Mallory said. “It’s good to see. He’s able to grasp things and he’s getting more and more motion every day. During therapy, we see a glimmer of where he was before and those give you glimpses of hope for what is to come when we get out of here.”
Junior’s family and his care team celebrate all those milestones, no matter how small. Whether it’s seeing him shake a maraca, sit up or play with a toy, it’s a big deal.
“People might think the ICU is doom and gloom,” Mallory said. “But we try to keep it really light and positive in Junior’s room. I make him laugh every single day, even if I have to jump around and act like a fool.”
For a young man of few words, he says a lot – whether through his eyes or sign language.
“He speaks through his expressions,” his mom said. “Even before we got here, he had delayed expressive language, so we incorporated some signs so we could communicate with him, and he hasn’t lost that at all.”
Junior is beloved by the Heart Center team, and he loves them right back, greeting them when they poke their heads inside his door each day.
For now, Mallory and Brian know their son is where he needs to be, and they are strengthened by the love and support they receive from friends, family and strangers. All they ask for are prayers.
“I got to pick Junior up and hold him today,” Mallory said. “I was able to just look at him and know that it’s all gonna be OK.”
That’s the power of hope and prayer.
Junior gets a new heart weeks before his first birthday - Brian and Mallory Aylor’s son was born with multiple heart defects. He has been hospitalized at Riley for 7 months.