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Shane Mullnix: a survivor

By ANDREA FURLONG

mullnix
Monster Truck driver Tom Meents and Shane Mullnix, 6, Williamsburg, pose shortly after driving Meents’ Monster Truck in Baton Rouge, La., March 12. Mullnix, who was born with a weak heart, met Meents through the Make a Wish Foundation.

At 6 years old, Shane Mullnix has fought more health battles than most children his age and probably even some adults. He fights asthma, allergies, a fragile immune system and weak heart, with a strong, lively spirit that has shown itself from birth. Shane’s heart may be weak, but his determination is strong. Shane Mullnix is a survivor.

When Shane was born, the morning of Feb. 18, 2004, doctors knew something was wrong. Within 10 hours of his birth, they were able to give his mother, Tina, a diagnosis: hypoplastic left heart syndrome (HLHS). The condition meant that Shane had an undeveloped heart and his life would depend on a transplant.

The human heart has two ventricles that circulate blood throughout the body. In a healthy heart, the right ventricle pumps blood to the lungs, while the left ventricle pumps blood to the rest of the body. In children with HLHS, the heart usually depends on the right ventricle to do both. Babies born with HLHS cannot survive without corrective surgery or a heart transplant.

Tina, Williamsburg, was left waiting, without any way to help her second child as machines supplied his body with oxygen.

“He actually couldn’t breathe on his own until he got the heart,” Tina recalled.

It was about one month later at 2:30 a.m., when Tina got the phone call she had been waiting for.

“I am a sound sleeper. For some reason, I didn’t sleep very well that night. The phone rang and it was his doctor, and he said, ‘Tina, we’re just calling to let you know we found him a match.’ I jump out of bed, I’m hitting Doug, and ‘I’m like, ‘Get up! They found one!’ I couldn’t believe it. I was so excited,” she said.

By 3:30 a.m., Tina and her husband Doug were at the hospital in Iowa City. On the way there, she called everyone she could think of to tell them the good news: her mom, dad, all three brothers and friends. By 6 a.m., she was signing forms of consent for her son’s surgery.

It wasn’t until 12 hours later that she saw her son. Tina had only had a few hours of sleep, but she could not contain her joy that everything went well.

“We were drinking a lot of coffee. I really wasn’t tired because I was on a high because I was so excited,” she said.

For the past 30 days, Tina and her husband had been in limbo, as they hoped for the best, yet prepared for the worst, as doctors had advised them to do.

“For him, the odds weren’t good because he was so little. The doctors were actually surprised that he lived. He was one of the kids that whenever the nurse would leave that night, she would tell him ‘Goodbye,’ and when she came the next day, she was surprised he was still there,” Tina recalled.

Infants who have the surgery or transplant done have a 60 percent chance of living to the age of five, according to the American Heart Association. Despite being born premature at just six pounds, the eight-week-old Shane successfully recovered from surgery to come home two months later.

A WEAK IMMUNE SYSTEM

Doctors told Tina that while the congenital heart defect had been one of the most difficult obstacles Shane had to fight to survive, it would probably not be his last. Shane would take anti-rejection medication for the rest of his life in order to prevent his body from rejecting his new heart. He would also have to keep his immune system at a level slightly lower than his peers as he was growing, as an extra precaution to help prevent his immune system from overriding the anti-rejection medication. Doctors knew this would leave Shane more vulnerable to viruses and infections than other children, so they encouraged preventative measures, like consistently using antibacterial gel.

Despite the family’s best measures, colds and infections seemed to be drawn to Shane.

“His first year after his transplant he was probably in the hospital 10 times. He would get a cold and it would just sit in his lungs, so he would end up with a lot of upper respiratory infections. When he would go in, he would be in at least a week,” Tina said.

Shane has probably seen more hospital visits in his 6 years than some other people their entire life. His tonsils were removed at two because he had reoccurring ear infections. His colds last for a month at a time and easily develop into sinus infections. It seems like he’s always on antibiotics. One time even the antibiotics made him sick and he contracted C. diff. Just this last winter, he was in the hospital three times in three months — a virus in September, H1N1 in October and pneumonia in November. During his stay, doctors noticed another problem: that Shane had an irregular heartbeat. The next month he was back in the hospital to undergo surgery for a pacemaker.

“Before his pacemaker, he would wake up a lot in the middle of the night and I think that’s the reason why . . . because his heart would stop,” Tina said.

Tina knew that hospital visits were becoming routine, but it really hit home, when she found her son had problems sleeping without the bleeps and blips of medical machines in the background.

“When he gets home it’s hard to get him to sleep because it’s so quiet. He has a John Deere clock in (his bedroom) that makes tractor noises. It does it at night and has a loud tick. I think it doesn’t bother him because he’s used to it. It’s comforting,” she said.

Tina was wondering what she could she could do to somehow make up for all the time lost in hospitals, when a nurse approached her to tell her Shane qualified to make a wish with the Make a Wish Foundation. The organization grants wishes to children with life-threatening illnesses.

MAKE A WISH

Tina consulted with her son before she turned in the application with his wish, even though she knew what it would be — to attend a Monster Truck Jam. There were few things Shane loved more in the world than Monster Truck derbies.

“Every Monday through Wednesday at 4 on the dot, he’s watching Monster trucks,” his mom said.

Ironically, his fascination with the big-wheeled armored pickups started at the age of 4, when he was recovering from a cold.

“He was sick one day. Doug was watching the Speed Channel and Monster Trucks were on, and the first time he ever saw it, he got right into it. Then he had to watch it every day,” Tina said, laughing.

There wasn’t a Monster Truck game broadcasted that Shane hadn’t seen at least once.

“It doesn’t matter how many times he has seen it. He watches it and he always finds something new that he hasn’t seen before,” she said.

A few months went by before Shane got his wish. Just a few days earlier the Tina, Doug, Shane and Shane’s sister, Hope, had celebrated the sixth anniversary of his heart transplant with a heart-shaped birthday cake. The timing could not have been more perfect. The family was given only a few days notice to pack for their 4-day trip, March 10-14, to Baton Rouge, La. The vacation included a trip to the zoo, tickets to two Monster Truck Jams and a personal three-hour visit with Shane’s favorite driver, Tom Meents. Meents gave Shane lots of personally autographed Monster Truck memorabilia, including a piece from his truck and a helmet. But, Shane’s favorite gift was getting a turn in the driver’s seat. Meents helped Shane steer around the track and run a few circles. Tina said she had never seen her son happier.

“The pictures with him and Tom after he drove it . . . as if his smile couldn’t get any bigger,” she said.

Tina said she was very grateful to the Make A Wish Foundation for making her son’s dream come true, but she feels the greatest gift Shane has ever received will always be his heart.

“In our books, it’s something to celebrate just like a birthday because six years ago wouldn’t be six years ago if someone wasn’t gracious enough to give us a heart,” Tina said.

UPDATED May 6, 2010 11:23 AM

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