Family gives thanks for a hearty child

In the last 6 months, T.J. Wilson, now age 2, overcame long odds thanks to a heart transplant


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Last Thanksgiving, the Wilson family was brimming with hope. They had a healthy son, had just returned home after living in Massachusetts and were preparing to buy a house.

But six months ago those plans went to pieces.

A parvovirus commandeered their lives by destroying the heart of their 1-year-old son, Harold, known as "T.J."

What ensued was a parental nightmare -- a roller-coaster ride that involved a cardiac arrest and resuscitation, a heart-lung machine, respirators, and even an experimental heart. The prognosis for recovery still seemed bleak until doctors recommended a heart transplant.

For six weeks, the Wilsons made critical decisions and held vigils beside T.J., who clung to life with a damaged heart.

Months later, T.J., now 2, has returned home to Adams, Butler County, where he again plays with Thomas the Tank Engine and watches "Elmo" DVDs.

His story illustrates how wise decisions can overcome bad luck, how medical science can be empowered by emotions and resolve, and how a child's will to live can defy odds. But most of all, T.J.'s tale underscores the importance of timing -- of being in the right place at the right time.

Eventually, T.J. awakened from his nightmare to say "Momma" then "Daddy" in a weak, raspy voice, with one tiny request: "Ba-ba." It's his word for water.

He was thirsty.

The onset

On June 11, T.J. went to day care and played as hard as any healthy 20-month-old boy. But that night, he grew fussy at bedtime, then started vomiting. His parents, Lori and Randy Wilson, cared for him all night long, then Mrs. Wilson took him to a pediatrician the next morning.

The doctor diagnosed a flu. But detecting unusual breathing, she recommended that T.J. head to an emergency room. Mrs. Wilson rushed him to Children's Hospital, and just in time to save T.J.'s life.

In Children's emergency room, he was placed on intravenous fluids to treat him for dehydration, but a chest X-ray revealed the possibility of pneumonia.

But soon after, T.J. began shivering, then shaking, and Mrs. Wilson knew something was terribly wrong. Checking his heartbeat, the doctor said, "He doesn't have one."

"That's something I never expected to hear a doctor say about my child," said Mrs. Wilson, 35.

T.J. had gone into cardiac arrest and died there in his mother's arms. But a doctor did chest compressions for 20 minutes, temporarily restoring a heartbeat, which could not be sustained.

So doctors recommended putting T.J. on extra-corporeal membrane oxygenation -- a heart-lung machine known as ECMO. Lucky for T.J., Children's had one ready for use. But it marked the first time ECMO was used in Children's emergency room. Placing tubes in his neck while he was undergoing chest compressions added to the challenge.

"It was a chaotic scene," said Dr. Victor O. Morell, Children's chief of pediatric cardiothoracic surgery, who hooked him up to ECMO. "It almost was like a MASH unit in war."

For six days, T.J. remained on ECMO while under a general anesthetic.

Because few trauma centers have ECMO, doctors said elsewhere he likely would have received 30 minutes of chest compressions then been declared dead.

But with ECMO, the risk of blood clots and bleeding grew daily. When doctors finally weaned him off the machine, his heart started pumping, but defectively so. A catheterization revealed a strong heartbeat, but also showed that his heart couldn't relax enough to refill with blood before each pump. The viral damage was irreparable.

T.J. needed a new heart.

Because his heart function was so unstable, cardiologists recommended implanting a Berlin Heart, but getting approval and acquiring the artificial heart would take several days, even a week. Because the Food and Drug Administration has yet to approve its use in the United States, Children's Hospital had to seek a "compassionate use" permit before implanting the device. The FDA gave its approval -- the fifth one Children's has received -- and a Berlin Heart was shipped in from Germany.

"It was the worst case every time," Mrs. Wilson said.

No longer on ECMO, T.J. was sustained by a respirator, but remained critical and unstable. After the Berlin Heart finally was implanted, he showed immediate improvement. But this, too, was temporary. He was placed on the transplant list July 11, a month after entering the hospital.

Several days later, doctors called the Wilsons into an office. Each previous time they'd been summoned there, they had received bad news. The Wilsons feared the worst.

Turnaround

But the tide had turned. The hospital confirmed they had a donor heart for T.J.

Dr. Peter Wearden, a cardiothoracic surgeon at Children's Hospital, retrieved the heart from a 5-year-old who was not identified. Meanwhile, Dr. Morell prepared T.J. for transplant, which occurred upon Dr. Wearden's return.

Soon after the three-hour operation, T.J. was awake and eating popsicles. The Wilsons said it was "the first glimmer he was OK."

"He was vibrant once again," said Mr. Wilson, a 36-year-old framer with a construction firm. "We knew how strong-willed this kid was. If there was an opportunity to pull through this, he'd do it."

Days later, Mrs. Wilson was allowed to hold her son for the first time in six weeks. He was weak and couldn't hold up his head. His muscles felt like jelly.

"But he had a little smile," Mrs. Wilson said. "He looked up at me and said, 'Momma.' "

Ideal place

Dr. Wearden said T.J. "went through the wringer." Children's, one of the busiest transplant centers in the nation, does 20 lung, heart and heart-lung transplants a year. It's also a leading center for heart-assist devices, he said. So T.J. was in the ideal place at the most critical juncture.

Dr. Steven Webber, chief of Children's Division of Cardiology, said T.J. was lucky to be at Children's when bad went to worse.

"If you are at the right place at the right time, care can be provided and miracles can happen," he said. "Had this happened a half-hour earlier, he wouldn't have survived."

It helped that T.J. is strong-willed, intelligent and cooperative, doctors said. Dr. Webber said T.J. also benefited from having parents who are good caregivers.

"I have a special fondness for T.J. He has incredible spirit," Dr. Wearden said. "There's something about him, and maybe that's because he went through so much with us."

Proof of his ordeal are the 1,200 beads he collected at Children's -- one for each medical procedure he underwent. With all the beads around his neck, "T.J. looks like Mr. T" when he comes to the hospital, Dr. Morell said.

Now at home, T.J. shows no signs of distress from his ordeal. He plays, climbs, tumbles, eats pretzels and wrestles with his dad. Initially on 13 drugs and 21 doses a day, he now takes five medications, including drugs to prevent rejection of his new heart.

"His numbers aren't perfect yet, but he's getting better," Mrs. Wilson said, noting that T.J. now experiences nightmares. He also faces dietary restrictions and must wear a mask in public to avoid infections. So Mrs. Wilson dressed him up as a doctor for Halloween.

And today the Wilsons are celebrating Thanksgiving with untold joy but heavy hearts. After battling for months, T.J. survived a potentially fatal virus by receiving a heart from a less fortunate 5-year-old.

They say they're dreadfully aware of what that child's family has suffered through.

"Our prayers of thanks this year will include the other family," Mrs. Wilson said. "The donor family gave us his life back."

To contribute to T.J.'s transplant fund visit www.cotafortjw.com.


David Templeton can be reached at dtempleton@post-gazette.com or 412-263-1578.


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