By Maureen Gilmer, IU Health senior journalist, firstname.lastname@example.org
Monday was a long day of tests for Michael Deiter. Not the kind of tests you take in school, but the kind that tell you your heart is doing its job.
Michael was at Riley Hospital for Children at IU Health this week so his care team could put his transplanted heart through its paces.
For the 15-year-old, it was hard enough to be up before dawn, but it was a chance to see old friends like cardiologists Dr. Robert Darragh, Dr. Marcus Schamberger, pediatric cardiac sonographer Nancy Kehlenbrink and so many others who have been by his side through the years.
“Long day with some of the greatest, most caring people we have had the pleasure of knowing for 15 years,” wrote Jennifer Gray, Michael’s mom, in a post on Facebook after her son sailed through his annual stress test.
It’s been a long 15 years too, Gray said, starting within days of her son’s birth. And if not for her mother’s intuition (Michael is the youngest of her four kids), his future might have looked very different.
Despite having no indication that there was anything wrong during pregnancy, Michael was born (at another Indianapolis hospital) with multiple complex heart defects that weren’t diagnosed until he was rushed to Riley when he was just four days old.
“It was a complete shock,” Gray said.
And it was only after she insisted multiple times that her son’s lethargy and breathing were not normal for a newborn that she was really heard.
ADVOCACY SAVED MICHAEL’S LIFE
“I kept telling the doctors that something was wrong because he was sleeping all the time. Everybody had a reason for him to be tired, but he would hardly even nurse,” she said.
Still, she and Michael’s dad, John, went home with their bundle of joy just as the weekend was about to start. That Sunday morning, Gray’s parents were visiting from Wisconsin, and she had Michael sitting on her lap.
“Michael was breathing funny. His nostrils were flaring,” she said. “My mom said it reminded her of my younger brother, who also has some congenital heart defects, though not anywhere near as severe.”
That night as her concern grew, Gray called the after-hours pediatrician, and the on-call nurse summoned an ambulance to their home. The paramedics checked out the newborn and determined there was nothing to worry about.
Gray admits to second-guessing herself for a minute.
“You start to wonder, am I crazy, am I sleep-deprived? No, I know what I’m doing,” she told herself.
She followed up with her pediatrician the next morning, and that’s when the physician heard the heart murmur and referred Michael to Riley that day.
Turns out, the little guy was born with multiple heart defects, including double inlet single ventricle (only one working pumping heart chamber), coarctation of the aorta (a narrowing of the aorta that can prevent blood from circulating to other organs) and septal defect (a hole in the wall between the heart’s lower chambers).
“We saw Dr. Timothy Cordes, and he was phenomenal,” Gray said. “He spent a couple hours with us, drawing diagrams and trying to help us grasp the severity of it. I completely get it now, but I didn’t back then.”
She shudders to think what might have happened if she didn’t seek more answers.
“I think that had we waited, he may have passed away in his sleep.”
Michael had his first of many surgeries the day after he arrived at Riley. It would be the beginning of a long journey in and out of the hospital.
“We’ve been in for every single holiday,” Gray said. “He’s had four pacemakers, he had arrythmias requiring cardioversion – 10 to 12 of those. He was a classic transplant case. They had done everything they could do surgically and with medication to make his heart last, and he was in heart failure.”
TIME FOR A TRANSPLANT
In the spring of 2015, when he was 8 years old, Michael was added to the heart transplant list and entered Riley to wait. On the 100th day of his admission, that heart arrived.
Dr. Mark Turrentine was his surgeon, as he had been for all but one of Michael’s heart procedures.
“We had a 100-day party planned that day, with cupcakes and everything, before we knew about the heart,” Gray said. “So it’s neat that it happened that way.”
Since then, Michael has flourished, she said. He has not had one inpatient stay since those months while he waited for and recovered from his heart transplant.
She would love to share more of his story with his heart donor’s family and hopes some day they might want to learn more. All they do know is that the heart of a little girl from Tennessee is beating in their son, and they are forever grateful.
“His dad and I both wrote a letter (sent via Indiana Donor Network), and we hope that someday we are one of those families that get a letter or something because I would love to know more about her,” Gray said. “I know it’s a gut punch. You don’t know what to say, but yet there’s so much to say.”
“WE ARE VERY LUCKY”
Now a freshman at Scecina Memorial High School, Michael loves video games and hanging out with friends, said his mom, who remarried the year before Michael’s transplant. All of the family has pulled together to support Michael throughout his health journey.
“We are very lucky,” Gray said of her family, her husband Sean’s family and her former husband and his family. “We celebrate birthdays together, go to doctor appointments together.”
She is also thankful for her Riley family, noting that so many of the physicians and technicians they’ve had since shortly after Michael’s birth.
“I think that is so rare, but it’s been so comforting because they have all treated him like he was their child,” she said. “It’s been amazing to have that 100 percent comfort in his care. That comfort, that peace and that total trust.”
Over the 120 days that Michael was hospitalized before and after transplant, the family practically lived at Riley. They had sleepovers with their other kids, movie nights, played board games and celebrated birthdays.
“We wanted life to go on for the other kids and for him,” Gray said.
The Riley team took care of them all through the years.
“Especially in the early years when he was so sick, there were times when I was a mess and completely broke down and there were nurses who sat with me,” she recalled. “They took care of our whole family.”
Michael comes back to Riley monthly for labs and every two months for transplant clinic, when he sees Dr. Darragh. In addition, he has annual heart caths and a stress test.
With Christmas approaching, the family is pulling out a few of their favorite ornaments for the tree, including a couple celebrating organ donation.
On his birthday cake every year, a green ribbon or balloon denoting organ donation honors his donor.
“We always remember her on his birthday,” Gray said.
His transplant anniversary is a little more quiet, she said, because Michael is humble and doesn’t like too much attention.
“He grasps how miraculous it is that he’s still here, but he doesn’t like to talk about it.”
Gray, however, loves to talk about it and is willing to share his story whenever and however it will help.
“Anything I can do to bring awareness to organ donation is what I want to do.”