Local News

RJ’s journey

Infant born with serious condition on the waiting list for a heart transplant

. WHAT: Rummage sale fundraiser.

. WHEN: Saturday from 9 a.m.-3 p.m.

. WHERE: Trinity Friends Church Life Center, 33937 U.S. Route 30, Lisbon

. WHY: Raise funds to help area infant with heart transplant-related expenses.

. INFO: Visit www.cotaforrjsjourney.com

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LEETONIA -- R.J. Bailey is like most infants. He's certainly got the motor skills. The rolling over part is down pat and he is working on sitting up. He has taken to his baby bouncer and is figuring out how to master his walker. He's playful and likes to giggle. Like a lot of us, R.J. likes to start his day with scrambled eggs. Maybe some puffed rice, too. A highlight of his day is snuggling next to his mama while napping. When awake, he can gab and gab. All in all, a content little guy.

"He's totally normal, you wouldn't think anything of it," said his mother, Brandy Moore. "The way he acts; the way he interacts."

But all is far from normal. At the mere age of 8-plus months Richard James Bailey -- aka R. J. -- is in need of a heart transplant. Most of us have likely never heard of a baby needing a heart transplant. Most of us have likely never heard of his ailment. Medical folks call his condition left ventricle noncompaction. It is a heart muscle disorder that occurs when the lower left chamber of the heart (left ventricle), which helps the heart pump blood, does not develop correctly. Instead of the muscle being smooth and hard, it is thick and spongy.

Brandy and R.J.'s dad, Richard Bailey, have five children between them. The family resides in Leetonia. Ages of the kids range from R.J. up through 18 years old -- four boys and one girl. R.J. was born last Aug. 4 at Mercy Health-St. Elizabeth Boardman Hospital. He was born with his condition. It was not genetic but he will possibly carry it in his own DNA.

"We didn't give any thoughts to anything when he was born," Brandy said. "The pre-birth checklist was good. But when breast fed he started to get sick."

A transition to baby formula was made. But with the same results.

"His heart was not working correctly; he kept throwing everything up," she said.

Then came a family reunion at a park in Minerva last summer when R.J. was just three weeks old. That is when harsh reality showed up and crashed the family get-together.

The baby was shivering en route to the park. There he became clammy and cold, barely breathing. His lips were turning blue. R.J. was rushed to the Alliance Hospital.

He was then taken to the Akron Children's Hospital. On his fifth day there, an MRI revealed the startling news that is was a very serious heart condition.

"They explained that when a baby is in a mother's womb, the heart is spongy then hardens," explained Brandy. "The bottom of his heart's left side is still spongy. It has little divots."

A good visual would be to imagine a newborn's heart being the size of a walnut. R.J. was born with his heart's lower left being three times it should be.

"So during all of this early on, we had no clue," Brandy said. "Since his heart wasn't working correctly, the right side was filling up with fluids. That's what impacted his breathing and stomach."

Since then there have been hospital visits to the Cleveland Clinic and pediatrician appointments. There have been fevers and dehydrations. Blood clots are a concern. A lifesaving daily medicine regimen is carefully maintained. Vigilance is constant.

Some meds are by injection. Some are oral.

"We will use a syringe and the little boy is so used to it," Brandy said. "He will open his mouth and is ready to go. Just give it to him. He is born to take this!"

But the wait is now on. And it could last a while. Since the medical treatment is working pretty well, R.J. is not in the front of the transplant line. A glance at data indicates that there are about 450 heart transplants performed yearly for children under 18 in the United States.

"Actually, infant transplants are more available than the older they get," Brandy said. "Because the meds are working so well, we are not on the top of the list. We will stay on however long as it needs to be."

With something as catastrophic as a child needing another heart, comes financial hardship with the bills. And there are plenty.

"There have been significant expenses," Brandy said. "A lot is covered by insurance but up this point we have had to sell things to be able to pay for bills --bills for gas and to eat when we are staying in Cleveland."

Richard works regionally in the tile industry.

"Day in, day out there's been a lot of stress," Brandy offered. "But we are so thankful for family members able to help. Especially helping with our other kids when we are at the hospital."

An organization called Children's Organ Transplant Association (COTA) has stepped up and become involved in raising some funds to be used when the transplant comes.

Funds raised through COTA on R.J.'s behalf are kept and used only when transplant time arrives. Information is available at www.cotaforrjsjourney.com

Donations are accepted at that site. And while you are saying a prayer for this precious young child perhaps you can donate and help out his journey.

Details on a Saturday fundraiser in Lisbon accompany this story.

jdcreer@mojonews.com