Farmington Hills baby waits for heart transplant .

Children's Hospital Los Angeles

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 11-month-old Ewan Ormerod, of Farmington Hills, has dilated cardiomyopathy and is in need of a heart transplant. Pictured, Bill Ormerod reads to his son at Children’s Hospital of Michigan in Detroit.

11-month-old Ewan Ormerod, of Farmington Hills, has dilated cardiomyopathy and is in need of a heart transplant. Pictured, Bill Ormerod reads to his son at Children’s Hospital of Michigan in Detroit.

Photo provided by the Ormerod family

 Megan Ormerod feeds her son, Ewan.

Megan Ormerod feeds her son, Ewan.

Photo provided by the Ormerod family

 Detroit Red Wings hockey players stopped by 11-month-old Ewan Ormerod’s hospital room during their annual Christmas visit to the Children’s Hospital.

Detroit Red Wings hockey players stopped by 11-month-old Ewan Ormerod’s hospital room during their annual Christmas visit to the Children’s Hospital.

Photo provided by the Ormerod family

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FARMINGTON HILLS — Being a parent innately comes with challenges, but there’s no greater challenge than sitting bedside at a hospital, watching your child fight to live.

That’s the position Bill and Megan Ormerod, of Farmington Hills, are in with their 11-month-old son, Ewan, who is currently at Children’s Hospital of Michigan in Detroit, waiting for a heart transplant.

The parents’ journey, which started just 13 days after their son’s birth, has been littered with ups and downs, good news and bad.

“I think we’ve been handing it OK, as good as one can expect,” Megan said about how the family is holding up. “Bill goes to work every day. I go to the hospital, and we’re both home at night, so we can spend time with our two other boys. We just make it work.”

Megan has taken a leave of absence from her job as a teacher. Bill continues to work full-time as a teacher and has added a part-time job to make ends meet. Ewan has two older brothers: Tyler, 15, and Cullen, 3.

“There’s no other choice, really. You just keep going,” Bill added.

Two weeks after his birth, Ewan’s body temperature dropped drastically and his skin began to turn blue. He was rushed by ambulance to the hospital.

Doctors spent the next two weeks determining that Ewan had a condition called sepsis-induced dilated cardiomyopathy, which causes a person’s left or right ventricle — in Ewan’s case, his left — to become abnormally enlarged and weaken the heart’s pumping action.

Doctors established a treatment plan, and over the next four months, Ewan’s condition looked better. He was able to go home.

On Oct. 18, however, Ewan was readmitted to the hospital, followed by a near-fatal scare Oct. 29 when Ewan went into cardiac arrest. It took 10 minutes of CPR to revive him.

It was then that Ewan was placed on life support and doctors determined he would need a heart transplant to live. Ewan received a Berlin Heart ventricular assistive heart pump Nov. 1 and is currently waiting for a donor that matches his heart size, blood and tissue type.

“Looking at him, if you couldn’t see the Berlin Heart, he looks like a happy, normal baby. He smiles constantly (and) loves when anyone comes in and acknowledges him in the room,” Megan said. “On the inside, he’s had a few issues.”

Bill said his son has the highest-priority designation. He doesn’t believe there’s anyone else on the list above Ewan with his same specifications.

“As far as a timeline, there’s no way to tell,” he said.

Hearing of Ewan’s journey, people across America have shown support by donating over $50,000 — the family’s initial goal — to a fundraiser through the Children Organ Transplant Association. The association has also pledged $5,000 to the fund.

The $50,000 raised is just the start — a milestone — said Frank Jones, the public relations coordinator for Ewan’s Children Organ Transplant Association campaign and a family friend for nearly 40 years.

A heart transplant can cost anywhere from a couple hundred thousand to over a million dollars, and the funds needed don’t stop there.

“Those bills are going to keep coming in as long as he’s needing medical care, which will be for a very long time,” Jones said. “There’s no way insurance can cover all that.”

After a successful transplant, Ewan will remain at the hospital for six weeks, followed by a two-month stay at the Detroit Ronald McDonald House while doctors monitor his recovery. Medications, testing and more will surely follow for his whole life.

“A heart transplant is a lifelong condition,” Bill said. “His immune system will be compromised indefinitely. … Luckily, medications and everything he’ll need, COTA will help take care of that for him. It means a lot.”

Ewan’s parents said the money donated has not only alleviated their financial worries, but the comments and prayers left alongside have helped keep their spirits high and made them feel they’re “not so alone.”

The Ormerods aren’t always sure what else they need, in terms of help, because this experience is new to them. They’re still “figuring it out.” Megan said if someone thinks of something, simply reach out.

Other acts of kindness have included Megan’s work supplying the family with a house full of groceries twice.

“Everybody has been wonderful. It’s made a world of difference,” Bill added.

Donations to COTA in honor of Ewan and messages of support may be shared with the Ormerod family at www.cota.org/campaigns/ COTAforEwan.

As the Ormerod family continues this journey, the fundraising page will stay active. Jones’ goal is to conduct some community fundraisers in metro Detroit, as well. All updates will be posted on Ewan’s fundraising page.

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