From the day he was born, little Miles was a fighter. This precious baby boy came into the world with a broken collar bone. Then, when he was about 4 weeks old, his mother, Mariah, and father, Javier, noticed something else was not right.
"He wasn't eating as much as he used to. He was coughing and had a runny nose," remembers Mariah.
Worried, they took their newborn to an emergency room in Louisiana near the Air Force base where they are stationed.
"The doctor told us babies shouldn't be coughing like that," remembers Javier.
They soon discovered that Miles had much more than a cold. Chest X-rays suggested that his heart was much bigger than it should be. Miles was admitted to a hospital where a cardiologist diagnosed him with a rare heart condition called dilated cardiomyopathy.
"His heart was enlarged, and they said he might need surgery," says Mariah.
In babies with dilated cardiomyopathy, the heart muscle becomes enlarged and cannot effectively pump or circulate blood to the lungs and the rest of the body.
Mariah and Javier prayed that oral medication and regular visits with the cardiologist would help their little guy – but his condition did not improve.
"Miles was still having trouble gaining weight, he was sleeping more than he should and the walls of his heart kept getting thinner," says Mariah.
Preparing baby Miles for a heart transplant
As Miles' condition became more serious, Mariah and Javier traveled to The Heart Center at Children's Health℠ in Dallas, one of the most experienced pediatric heart transplant centers in the country. And they took a big step – they put their tiny baby, barely 4 months old, on a waiting list for a donor heart.
Mariah and Javier had done their research, but they were flooded with emotions.
"Ever since we found out he had heart disease, we worried. I blamed myself because I always felt maybe I could have done something during my pregnancy to prevent this," says Mariah. "But the team reassured us, ‘No, there's nothing you could've done to prevent this.' I think we were just sad and scared all at once."
As concerned as Miles' parents were, they stayed strong.
"We're used to dealing with stressful situations and finding a solution. We had each other to lean on," says Javier.
Mariah and Javier received constant encouragement from their family members, friends and Air Force family, who supported them from afar. "They did more than we could ask for, and made the experience a little easier," says Mariah.
And they also had the support of the understanding care team at Children's Health. Every step of the way, doctors, nurses and family therapists worked to address their concerns. They made sure Mariah and Javier knew exactly what was happening with their baby's heart and how doctors were caring for him while he waited for a new one.
"The care at Children's Health has been amazing – not only for Miles but for us, too," says Javier.
A miracle for Miles – and a milestone for Children's Health
The wait for a new heart can be unpredictable. Sometimes families wait a few weeks or longer to get a heart for their child. For Miles, it was about a week.
Ryan Davies, M.D., a pediatric cardiothoracic surgeon and Surgical Director of Pediatric Heart Transplant Medicine at Children's Health and Associate Professor at UT Southwestern, shared the good news with Mariah and Javier. Baby Miles was getting a new heart. It was a lifesaving surgery for Miles and a milestone for the Heart Center team – their 300th transplant.
"Of course, I worried. What if it doesn't take?" remembers Mariah. "But the team seemed confident. And since this was their 300th transplant, we knew we were in good hands."
"Knowing our doctors have helped many other children gave us peace of mind. We knew they were experienced," says Javier.
Hearts filled with gratitude
Today, Miles is active and growing with his new heart.
"He's bounced back pretty fast. Maybe three days after transplant surgery, he was already kicking and moving and smiling," says Mariah. "I don't know how he's doing it, but he's doing it."
Through it all – the pokes, tests, medicines and surgery – Miles kept a smile on his face.
"He's a very happy, social baby. He made us strong because we didn't see him sad and hurting all the time," his parents say.
Just two weeks after his heart transplant, on his 5 month birthday, Mariah and Javier were able to take Miles home. But leaving their support team at Children's Health was bittersweet.
"Obviously, we wanted to go back to our normal lives. But at the same time, the people here – every nurse, doctor, therapist, tech – have been wonderful," says Javier. "It's 10 out of 10 care."
"Knowing that our son is doing great and recovering more quickly than we thought is amazing," says Mariah. "We wish and pray for other babies and children to recover the same way our Miles has."
The renowned team of pediatric cardiovascular experts at Children's Health provides effective treatment for the full spectrum of pediatric heart conditions with outcome statistics that rank among the national leaders. To learn about our full range of pediatric heart services, contact the The Heart Center at Children's Health.
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