Douglas County boy, 4, wants ‘superhero heart’ for transplant

Amy and T.Q. Warren wake up every morning wondering if this will be the day. If this will be the day they get “The Call.”

The call notifying them a donor has been found for their son Cortez, who turned 4 on March 10th, and who needs a heart transplant. They have been doing everything in their power to find him a brand new heart so that he can run around like every other kid his age. It took quite a bit of consultation with various doctors before they decided on where to have his transplant performed.

“We’re supposed to have a bag packed and ready, so we can leave as soon as we can after  we get the call,” T.Q. said. “Cortez’s status is 1A, which is the highest priority status.”

Amy and T.Q. met through Bert Nash. Amy is the adult outpatient team leader; T.Q. is an integrated dual diagnosis treatment case manager. They have three adopted children: Cortez and his younger sister, Quinn, 2, and an older half-sister, Jordan, 6.

The Warrens were made aware of Cortez’s heart condition – left ventricular non-compaction cardiomyopathy – at the time of the adoption process.

“He’s been in congestive heart failure since he first came to live with us in 2011,” Amy said.

At the time of adoption, the Warrens were told Cortez would need a heart transplant someday. That day came sooner than expected.

“I was really hoping he would be older to have the transplant, when he would be a little stronger,” Amy said.

But Cortez’s heart is failing faster than anticipated. The Warrens learned of Cortez’s worsening condition when they took him to St. Louis Children’s Hospital for his annual catheterization on Feb. 19, which checks the functioning of his heart and lungs.

“We just thought we’d go home the next day, but afterward the doctor came in and talked about listing Cortez for a heart transplant, which they did a few days later,” T.Q. said.

It wasn’t the news the Warrens were expecting.

“We were surprised,” Amy said. “We’re still in shock.”

By outward appearances, Cortez seemed like his usual active self.

“They had told us before that when kids reach this stage their skin color is blue and they don’t have any energy, and he had a lot of energy,” Amy said. “He didn’t have any of the external symptoms. When you spend time with him, you certainly wouldn’t know he needed a transplant. But, internally, his heart is in failure.”

Doctors put Cortez on a new medication that will hopefully slow down his heart – his heart beats faster than most adults’ in their 60s or 70s. Cortez spent a week in the hospital so he could be monitored on the new medication.

While the call could come anytime that a donor heart has been found, the Warrens were told to expect it could take several months.

“Because of his age and size they said it would likely be six months or nine months,” Amy said. “He’s not even 30 pounds. His younger sister Quinn weighs more than he does.”

Cortez understands – as well as a 4-year-old can – that he will get a new heart. “What kind of heart is it going to be?” Amy asked her son.

“A big one,” he said.

“A superhero heart?” Amy asked. “Yeah!” Cortez said.

“What are we going to do after you get a new heart?” “Go to Disney World!” Cortez said.

“That’s the plan is after he gets his heart we’re going to go to Disney World,” Amy said. The transplant will be done at St. Louis Children’s Hospital.

“They’ve been great,” T.Q. said.

So have T.Q. and Amy’s coworkers at Bert Nash.

“People have been amazing,” Amy said. “We’ve had so much support. From day one when we brought the  kids home, Bert Nash has been a huge part of our support system."