February 19, 2016

‘You see how precious life is’: A child’s need for a transplant leads a faith community to give from the heart

For most of his nine years, Michael Deiter has faced the continuing prognosis that he “could die at any time.” Here, the third-grade student at Our Lady of Lourdes School in Indianapolis is all smiles shortly after he celebrated a major moment in his spiritual life—receiving his first Communion. (Submitted photo)

For most of his nine years, Michael Deiter has faced the continuing prognosis that he “could die at any time.” Here, the third-grade student at Our Lady of Lourdes School in Indianapolis is all smiles shortly after he celebrated a major moment in his spiritual life—receiving his first Communion. (Submitted photo)

By John Shaughnessy

For a child, there are moments in life when all that matters is the desire to be accepted, to belong.

For parents, there are times in life when their greatest longing is to share their deepest beliefs with their child—and to have those beliefs embraced by their child.

That desire of a child and that longing of parents blended in a special moment during this school year when 9-year-old Michael Deiter and his parents—John Deiter and Jennifer Gray—approached the altar at Our Lady of Lourdes Church in Indianapolis.

In many ways, the scene reflected the timeless Catholic tradition that will unfold again this spring when countless number of children around the archdiocese and the world will receive their first holy Communion.

Yet as Michael—in his blue suit, white shirt and white tie—prepared to receive a host from Father Michael Welch, everyone in the crowded church understood there was an extra special quality to this sacramental moment that had been arranged just for Michael.

After all, so many of them had been touched by his journey that has been described as “miraculous.”

It’s a journey during which Michael was diagnosed with five congenital heart defects shortly after his birth, endured 12 surgeries, and lived with the doctors’ continuing prognosis that “he could die at any time” as he awaited a heart transplant.

It’s a journey that has also revealed the hope of a child, the faith of a family, the remarkable gift of strangers, and the unwavering support of a Catholic community.

‘You see how precious life is’

Michael’s parents couldn’t have been more thrilled when he was born on Sept. 13, 2006. Within a week, they couldn’t have been more shaken to their core.

Four days after their son came home from the hospital, Michael’s mom noticed he was having trouble breathing. Her concern quickly led to a meeting with a cardiologist who determined that Michael had five heart defects and needed immediate surgery.

“From the beginning, they told us he could die at any time because of this,” his father recalls. “That’s the first thought you have every morning and the last thought you have every night.”

“You see how precious life is,” says Michael’s mother.

Prayer immediately became a daily constant for Michael’s parents, even while they struggled to understand why their child was in this situation.

“The first three years of his life, I was so ticked off at God,” Michael’s mom says. “I thought, ‘What did I do to deserve this?’ As time went on, I realized I was chosen to be his mom. God knew I would fight for him, and for any needs he would have. And he knew his [four, older] siblings could handle it.”

That combination of faith and resolve anchored the family through the 12 surgeries, and the “57,000 doses of oral medications” to Michael through the years. Yet that faith and resolve were especially tested when his parents met with his doctors in the summer of 2014.

“We understood his heart was going to fail,” his dad says. “The doctors said he would eventually need a transplant.”

A crucial decision of faith

As the family prepared for the inevitability of a heart transplant, Michael started second grade at Our Lady of Lourdes School in August of 2014. It was the school year when Michael and his classmates would prepare to receive their first Communion.

For a while, it looked like Michael would make his first Communion with his classmates on the scheduled date of May 2, 2015. But less than three weeks before that sacramental rite of passage, Michael officially became a candidate for a heart transplant. He entered Riley Hospital for Children in Indianapolis on April 16. He would stay there until a new heart for him could be found—without any assurance of that happening. The wait and the worry began.

It was also a time when one crucial decision of faith was made by Michael’s father, one extraordinary plan was put into action by his mother, and several uplifting choices were embraced by his classmates and his teacher.

As weeks passed and Michael still waited for a heart, someone suggested that he could make his first Communion in his hospital room. His father decided against the plan.

“People said, ‘You have to get this in for him.’ They wanted to rush it,” Michael’s dad recalls. “I said, ‘No, we’re going to do it after he gets a heart.’ I wanted to believe he was going to make it through all of this.”

That belief was also shared by his then-second-grade classmates and their teacher, Eileen Winter. His classmates always kept Michael in their prayer intentions. They also planned a school-wide “Super Hero Day” in his honor. Dressed as the Incredible Hulk, Winter strode through her classroom and the school’s halls surrounded by Supermans, Spidermans, Captain Americas, Wonder Women and Teenage Mutant Ninja Turtles of all shapes and sizes.

Wearing their costumes, Michael’s classmates used Skype to connect with him visually by computer. It became a routine that never felt like one.

“The smile it put on his face and for them to be able to talk to him was the best thing ever,” Winter recalls. “It was amazing.”

So was the plan that Michael’s mother made.

An excruciating wait for a perfect heart

Jennifer Gray vowed that for as long as Michael was in the hospital waiting for a transplant, there wouldn’t be one second when he was alone.

Even though she and Michael’s father worked full-time jobs, they devoted most of their free time to being at the hospital with Michael. And for the times they weren’t able to be there, she set up a schedule so that family members, friends, teachers and parents of Michael’s classmates could cover every time slot.

The plan worked as 10 days passed, then 20, then 30, then 40, then 50. The plan continued even as 60 days passed, then 70, then 80, then 90.

As the prayers poured forth from the school and the parish during those three months, 18 possible new hearts surfaced for Michael, giving hope each time to everyone connected to him. Yet each time, there was something about the heart that wasn’t right for Michael.

The waiting grew excruciating, but the prayers and the faith of his parents stayed constant.

“You never stop praying,” Michael’s dad says. “It’s because God is the reason I’m here, the reason we’re all here. We’d thank him all the time when we got through another day.”

“I knew that if Michael didn’t make it through, it’s what God would have wanted,” Michael’s mom says. “And I know that heaven is a great place.”

On the 100th day that Michael was in the hospital, his parents received another phone call about a possible heart. This time, it was a perfect match for him.

‘A very humbling experience’

The news brought a rush of hope, excitement and the glorious feeling of, “Can this finally be happening?!”

It also brought some sobering thoughts.

“You stand there for a minute, and you can’t believe they found the perfect heart,” Michael’s mom says. “Then on the drive to the hospital, you think that another child is losing their life, and someone is losing their child. It’s a very humbling experience. You feel for those parents and everyone in that family. And you’re so thankful they found the strength to donate their child’s organs so Michael could live. I can’t imagine what they went through, and are still going through.”

The transplant surgery on July 24 lasted 12 hours. The results were immediate.

“The first thing I noticed was his color—how pink his lips were and how rosy his cheeks were,” his mom says. “Before the transplant, his lips were a little purple and his skin was dusky. I thought he looked remarkable.”

Another 26 days passed before Michael was released from the hospital. For fear of infection, he didn’t return to school until late October. A resource teacher kept him on track academically at home. And the emotional support continued with cards, gifts and visits from students and staff at Our Lady of Lourdes.

“The kids missed him,” says Mary Ellen Morris, the third-grade teacher. “We had a stuffed bear in his chair. They would talk to him like he was there. We even took the bear to our overnight trip to Camp Tecumseh. When Michael returned, they were very excited. They all take care of him even though he’s perfectly fine.”

She shakes her head in amazement. “It’s a miracle he’s here. It’s amazing what modern medicine and prayer have done for him. Sometimes he’ll be walking down the hall and it will just strike you: He’s so healthy.”

‘This is what we call a miracle’

Another striking characteristic about Michael now is that his eyes almost seem to dance with light.

Initially shy when meeting a stranger, he soon smiles as he talks about playing touch football earlier in the day with his classmates at recess.

And the smile continues to beam when he recalls Super Hero Day, his return to school to the delight of his classmates, and all the joy surrounding the day when he made his first Communion on Nov. 12.

The special Communion celebration was scheduled after a meeting with Michael’s parents, parish administrator Father Welch and school principal Chris Kolakovich. Michael’s parents wanted him to receive the sacrament at an all-school Mass as a sign of appreciation for all the support their family received from the school and parish community.

As Kolakovich watched Michael walk toward the altar with his parents, he also looked around and noticed the intense interest from everyone in the church. Most people smiled toward Michael. Others wiped away tears.

“I think the kids have learned that there is power in faith and power in prayer, and also the power of a community that supports each other,” the principal says. “Our kids knew that Michael was in a very serious situation, and they did what they could to support him. I think they saw, too, after Michael came out healthy, that there is something to be said for both courage and faith. They saw Michael and his family approach the situation with courage and faith.”

It’s a faith that has been part of John Deiter’s life since his baptism, a faith he has relied on through the first nine years of Michael’s life, a faith he wants his son to share. Standing near the altar with his son, Deiter knew there had been at least two times when Michael’s death seemed imminent.

“When I asked the doctors about those times, they said, ‘This is what we call a miracle.’

“Michael’s first Communion was so important to me. It was magical.”

Michael’s mom had a similar thought on the day of his first Communion, a day when there was the understanding for many that the time we have in life, the time we have with each other, and the time we have to live our faith is fleeting and ever precious.

“Not everyone gets a second chance at life,” she says. “It’s important to me that we made the best of a situation where you don’t know the outcome. We kept the faith, and we couldn’t have done it without the family, the friends, the school and the church community.”

She pauses, takes a deep breath and says, “There’s not a day that goes by that I don’t thank God for watching over him. All the medicine and science couldn’t save him. It’s because of God’s will. The whole journey of Michael is so amazing, every step of it. I say prayers for the donor family. I’m reminded that this last Christmas we had was their first without their son or daughter. And it was our first Christmas with Michael being healthy.

“I think his donor is up there keeping track of him.” †

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