Kansas baby with bad heart fights on at Children’s Mercy Hospital

Posted: Feb 27, 2018 1:50 PM CST Updated: Feb 28, 2018 12:45 PM CST

KANSAS CITY, MO (KCTV) –February is Heart Health Month, and it also marks three years since Children’s Mercy Hospital conducted their first heart transplant.

Right now, seven of their babies are in need of a new heart.

Before 2015, if a baby in the Kansas City area was in need of a heart, the family would have to go to either St. Louis, Denver or Dallas. One family from Manhattan, KS is sharing their story to show the importance of the doctors work and raise awareness about how you can help.

“I was excited we knew we were having a boy and Jase was going to be a big brother,” Cassie Schafer said.

“I was excited we knew we were having a boy and Jase was going to be a big brother,” Cassie Schafer said. (Submitted)

She explained that compared to her first pregnancy with her 3-year-old son Jase, her most recent pregnancy was a breeze.

“The pregnancy itself went great – no concerns there,” she said.

When Colby was born in September, Schafer and her husband, Shad Schafer, headed home a happy family of four.

“We were home for close to a week before we noticed Colby got sick his temperature was really low. Mom checked it on a whim,” Shad Schafer said.

An 89-degree temperature and an emergency plane ride from Manhattan to Children’s Mercy is where their unexpected five-month journey began. The couple said the journey has taught them more about their little boy’s heart than they ever thought they’d know.

Myocarditis is Colby’s disease. It’s is a long and tough road.

Myocarditis is Colby’s disease. It’s is a long and tough road. (Submitted)

“That is when certain viruses can attack muscle of the heart and make it hard for it to pump,” said Dr. Aliessa Barnes. “I was recruited here to Children’s Mercy to start the heart transplant program so that this hospital could offer that amazing service to the people of this area.”

Barnes’ arrival from Dallas is a piece of calm in a dark storm.

“Colby actually coded a couple times. They gave him CPR for close to 90 minutes until they could get him on the ECMO – and that first three days – we didn’t really think Colby was going to make it. We discussed organ donation because their outlook wasn’t that great. He was that sick,” Shad Schafer said.

Not only did the doctors save him, but they got him hooked up to a mechanical heart while he waits on a list to find a new one and a fresh start.

If this had happened three years earlier, the situation would be even tougher. Barnes said families who have to pick up and move, find themselves struggling with a lack of family support and familiar surroundings.

“This is a huge huge advantage and amazing program we brought here,” Barnes said.

“Colby is in the right spot. I wouldn’t want him to be anywhere else right now,” Shad Schafer said.

Now, every day is a game of sit and wait. But it is one they can do close to home.

“I hope and pray every day that we get that call,” Cassie Schafer said.

“I’ve seen it as soon as 24 hours. I’ve seen people wait for a year. It’s just tough to know when that gift will come,” Barnes said.

Until then, the Schafers are raising awareness for organ donation.

“You’re giving your child the option to be a hero for someone else,” Cassie Schafer said.

Once Colby does get that heart, his family said they are sure he’ll continue to win his battle with a smile on his face.

Once Colby does get that heart, his family said they are sure he’ll continue to win his battle with a smile on his face. (Submitted)

Children’s Mercy has done 12 heart transplants so far.

For kids, finding a heart is much more difficult than an adult. It must be the perfect fit and size. Sadly, when one is found, it means another child’s life has come to an end.

Cassie Schafer said she is so thankful to both Children’s Mercy staff and The Ronald McDonald House. It has given her a place to stay for the past five months. Her husband has been commuting from Manhattan on weekends.

The couple asks that if you’d like to help, you to make a donation to Ronald McDonald House or Children’s Mercy Hospital.

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