Christmas at the Waddleton house this year will be more than a celebration.

It will be a joyous celebration of miracles and life.

Not just the miracle of a birth in a manger, but the miracle of a new heart for 6 1/2-month-old Kaleb Waddleton.

The son of Marissa and Kale Waddleton of Covington, Kaleb, who was born on June 9, was a happy, healthy baby ... until suddenly he wasn’t the content child his parents knew.

The first indication that something was wrong came when Kaleb was almost 3-months-old.

“We took him to the pediatrician,” Marissa said, “and she said he had a cold. I thought it was a little more than a cold, but I didn’t want to think it was anything else.

“We went to my father-in-law’s beach house on Tybee Island and Kaleb wasn’t sleeping through the night — and he always did — and he wasn’t eating his bottle — and he always did.”

For the first time, Kaleb didn’t sleep through the night and he was very, very uncomfortable. “We knew something was wrong,” Waddleton said. “We took him to children’s urgent care in Stockbridge.”

It was Sept. 6, and while the Waddletons knew there was something wrong, they never suspected it was heart related.

“I thought maybe he was teething,” she said. “We were Googling everything, but nothing pointed to his heart. It never crossed my mind.”

But it was his heart.

A new heart is needed

Kaleb was born with a medical condition known as Left Ventricular Non-Compaction Cardiomyopathy (LVNC). At birth, the heart is a muscle with a sponge-like network of muscle fibers. Those muscles strengthen with each beat of the heart until the heart transforms from sponge-like to smooth and solid.

That doesn’t happen when a baby is born with LVNC. Instead, the left ventrical does not compact, the sponge-like muscle doesn’t strengthen, and eventually, the damage evolves into dilated cardiomyopathy (DCM) or restrictive cardiomyopathy.

With DCM, the heart’s ability to pump blood is decreased because the heart’s main chamber, the left ventricle, is enlarged and weakened.

“He was born with it,” Waddleton said, “but it took three months to show up.”

Of course, the Waddletons — and the doctors at the Stockbridge urgent care — were not set up for specialized diagnoses. All anyone knew was something was wrong, very wrong.

Wrong enough that Kaleb was immediately sent by helicopter to Egleston-Children’s Healthcare of Atlanta (CHOA). The Waddletons had to follow by car.

Though in reality, it took 45 minutes to get to the hospital, it was one of the longest car trips the couple has ever taken.
For three — almost four — days, the couple waited to find out what was wrong with their son. It was “rough,” Waddleton said. “We didn’t know what was going to happen to him.”

Finally, the surgeon at CHOA was able to tell the young couple their son needed a new heart. Waddleton said, “It was actually a relief. For them to say he needed a heart transplant, we knew what it was we had to do to get him back home.”

Though told it would probably be at about three months before a heart came available, the Waddletons, like any parents, hoped it would happen earlier. But it was 11 weeks, on Dec. 4, the couple got the news: a heart had come available.

A possible heart is found

At 3:30 p.m., Kaleb was taken in to prep for possible surgery.

“The surgeon won’t start [the surgery] until he sees the donated heart,” Waddleton said. “If the heart doesn’t look as good as the surgeon needs, he won’t start.”

But at 5 p.m., the couple received word: the surgery was a go.

“It was exciting and nerve-wracking and scary,” Waddleton said. “All of our family was there for support and that really helped, having a large crowd. [The waiting] time went by very fast.”

They received updates every hour, and almost four hours later, the surgeon came out and told them everything had gone well.

Though jubilant at the news, Waddleton said it was also bittersweet. They were excited because Kaleb was getting a new heart and they would be bringing him home, but they also knew it meant another couple was “mourning the loss of their baby. It’s very sad.”

The 25-year-old mother is deeply grateful to the family who donated their child’s organs. “To make that decision, to donate organs, you don’t realize how many lives you save,” she said. “Making that one little decision helps so many other lives.”

Learning to care for their son

Over the next six days, the Waddletons had a crash course in caring for an infant with a transplanted organ.

“We had to learn all of his medicines, learn the signs of infection and rejection,” she said. “We had to learn how to take all of his vitals — we have to do that every day.

“He’s still on a feeding tube,” she said. “The formula he’s on is nasty. It tastes like cement. He won’t drink it, so he’s on a feeding tube, hopefully [only] for another five weeks.”

Kaleb also takes regular formula and is already eating baby food. “He plumped up,” she said. “He’s not malnourished.”

The baby’s immune system is suppressed, she said, so he can’t be around many other people, only immediate family.

One of the medicines he’s on protects him “because if he gets anything, it will attack his new heart.”

And while his immune system will always be suppressed, Waddleton said, the doctors have told them that “after the first year, he’ll be a normal little boy. It’s tough while they get his medicines adjusted.”

She also said it was hard “seeing everyone else doing this Kaleb can’t do,” like going outside, or being able to lay on his belly in preparation for crawling. He’ll be starting physical therapy soon, so he can catch up developmentally.

“When he was born, we thought he was going to do everything early,” she said. “He’s trying to sit up on his own ... it won’t take him long to catch up.”

Prayers from thousands

A Facebook page for Kaleb was created when the couple first learned their son needed a new heart. The story went viral and Kaleb now has 15,000 people following him on Facebook.

“Just having all the support from people — it helped us stay strong,” Waddleton said. “It’s the reason we came home — all the prayers and people thinking about us. We had no idea it would get this big. It’s really spread and people have reached out from all over and have been very, very, very generous.

“And we didn’t ask for any of it,” she said

But it helps tremendously. Kaleb’s father, Kale, 28, is on unpaid family leave from his maintenance job at Pratt Industries in Conyers. He will return to work after Jan. 1.

Waddleton, who worked at least part-time and planned on working while their son was a baby, has become a stay-at-home-mom. She never expected to be able to do that, and feels blessed it has been made possible.

As for Christmas, it will be another fulfillment of a miracle.

“We’ll be home and the family will come over and it’s going to be wonderful because we expected we weren’t going to be home,” she said. “[Christmas is] going to be even more special now that he’s home.”

In addition to being able to follow the family’s progress on a Facebook at https://www.facebook.com/groups/1000241916663489/, Kaleb has a Go Fund Me page at http://m.gofund.me/prayersforkaleb