FORT SMITH, Ark. – With eyes that light up and a smile for everyone, people might say William Elijah Lyon is all heart. However, it’s the 5-month-old’s heart that needs to be replaced and soon.
“Being on this side of it has totally made me realize there is not enough people that really think about it, especially in small children,” Nanci Tankersley, William’s grandmother, said about transplant awareness.
William, affectionately known as Liam, was born Feb. 18, 2011 with half a heart. He has two chambers and one ventricle, versus four chambers and two ventricles. His condition is called hypoplastic left heart syndrome.
“If you’re missing the left side of your heart, that is the more serious type of defect that we see and without surgery it is lethal,” Dr. Elizabeth Frazier, medical director of the Pediatric Cardiac Transplant Program at Arkansas Children’s Hospital, said. “Some babies are not good candidates to have the number of procedures and all that they need in order to survive. In that case the only option is to get a transplant or in Liam’s case, he’s had a number of operations and still his heart function is poor so it is necessary for him to wait for a heart transplant.”
Tankersley said when Liam was born at 3:25 a.m. at St. Edwards Hospital in Fort Smith, Ark. his head was a reddish and bluish color. He was flown to St. Francis Hospital in Tulsa less than 12 hours later. But eventually he was flown by jet to Children’s Hospital in Little Rock, Ark. when it was realized he needed a transplant.
Liam, who was born five weeks early, weighed 6 lbs. at birth and is now close to 14 lbs. He had two surgeries that initially seemed to work, but his heart began failing again, so he was put back on the transplant list.
“They said it’s hard for infants to get a transplant,” Tankersley said, noting the difference between an infant heart and a toddler heart. “If you get an infant heart it’s usually from shaken death syndrome or an infant born brain dead or something. But then you have to deal with the fact that parents don’t want to think about that … or just don’t think about it … at that time they don’t think about donating organs. It’s very, very hard because you don’t want to pray for someone else to lose a child or anything; just have to pray that they have the wisdom, that if that happens, they can help someone else. It’s just a catch 22.”
Frazier said there’s a law called Required Request that mandates physicians in hospitals, especially in the pediatric or neonatal intensive care units, to offer organ donations to all families. She said there are circumstances where doctors can utilize the beating heart, kidneys and liver but other cases where the child dies and their heart has quit beating. In that instance, some of the usable parts are the heart valve, cornea, bone, and cartilage.
Liam’s parents Whitney and Brody Lyon of Cameron, Okla. have watched their son grow up in Arkansas Children’s Hospital, and Liam’s great-grandmother, who is unable to travel to the hospital, has never seen him.
“(It’s) a lot for anyone to endure, let alone a 5-month-old baby whose never been at home,” Whitney Lyon, Choctaw, said. “This is all he’s known since he was born.”
Although Liam’s family can’t always hear his voice when there’s a tube in his mouth, they are graced with his smile and know he recognizes them.
“He’s the strongest person I ever met … He’s the biggest fighter I’ve ever, ever seen. For somebody that small to be able to go through as much as he has it’s amazing, and he knows everybody. You can tell whenever he recognizes somebody because he’ll just look, and you can tell in his eyes that he’s very; very smart … He’s really taught me a lot. For him to go through all of this that he’s gone through and still be able to smile, that says a lot about a person. It puts everything into perspective … he’s such an amazing little boy,” Lyon said.
Lyon, her 6-year-old daughter Chyanne, and her mom, Tankersley, were staying at the Ronald McDonald house; however, they could only live there in 30 day time periods. Luckily, the Pulaski Heights Baptist Church in Little Rock provided them with a home to stay in. Liam’s father has to remain in Oklahoma to continue working, but drives to Little Rock when he can.
“She (Whitney) has Sooner Care and I’m hoping that will help with expenses because I assure you they’re way up there,” Tankersley said. “There’s no way they’re ever going to recover from this.”
Tankersley ’s friend, Gina Gray, Osage, donated a painting for the family to raffle, people from the family’s home town held fundraisers, and new friends from around the country have provided words of encouragement via the family’s Facebook page: http://www.facebook.com/pages/I-Love-Liam-Lyon/137992366273067
Also, Tankersley said, “The Choctaw people know he’s here and they’re supportive in helping Whitney.”
“Without my family I don’t know how I would have been able to do this … Liam’s dad has been great; he’s my rock,” Lyon said. “Then there’s my daughter. Liam’s sister has been here. She can tell whenever momma’s not having a good day. She’ll just come up to me and she’ll put her arms around me. She’ll tell me she loves me and you know that just takes away everything and helps me relax. It’s not easy with her either. She’s had to deal with a complete life change and she’s done so, so, so good. I’m so proud of her.”
Tankersley said transplant awareness “probably freaks a lot of people out and in Indian culture it might not be as popular,” but she hopes people become more aware. “I’ve gotten a lot of support from Osage people, personally, and I just thought that was a nice thing for them to reach out to someone that’s not even in their tribe,” she said.
Frazier said one in every 100 babies has a heart defect; sometimes it’s very minor and sometimes it’s severe. She said the Arkansas Children’s Hospital is a large cardiac center that deals with most infants in Arkansas and surrounding states that have complex congenital heart disease. Over the last five years, the hospital has averaged about 20-25 total pediatric transplants per year, which includes little babies as well as older adolescents. She said the hospital is probably one of the top five largest pediatric centers in America.
“Most of the time there is not a specific insult that causes babies to have a heart defect. In some cases we know there is an association with genetic diseases like Down syndrome or … when you just don’t get the right genetic input,” Frazier said. “But for the most part it is considered to be multi-factorial, meaning a lot of different influences occurred at a certain time of pregnancy which resulted in this mistake. So it’s really just a mistake of nature.”
Frazier said infant heart transplants tend to wait the longest. The wait used to average around 70 days, however in 2011 there are more centers that perform infant heart transplants, and more infants in need of one, so the wait is longer. The United Network for Organ Sharing (UNOS) is in charge of giving out the hearts to the best match, based on anonymity.
“We do know there are different groups of people that are not proponents of it (organ donation) for whatever reasons, religious or otherwise, but I think people need to educate themselves about it, what it really means. There are literally hundreds of thousands of individuals in the United States that are waiting for organ donations for various things; that depend on this for their life,” Frazier said.
Lyon said she is happy with the Arkansas Children’s Hospital and the doctors. She credits her sister, Jamie Ward, who is a registered nurse for saving her baby. Ward insisted Lyon go to St. Edwards Hospital for prenatal care and delivery. At St. Edwards, Dr. Segleum, who Lyon calls their angel in waiting, knew about “the half heart baby,” and was the person who diagnosed Liam.
“I would really like everyone to know how thankful we are. If we get one thing out of this, I want organ awareness because without that there’s no way he would live,” Lyon said, with her words fading in and out as she sobbed. “I know how hard it would have to be on the other side (donor’s) … that is Liam’s only chance at life, is to get a heart.”
Frazier also recognizes organ donation is a difficult decision, and the children she cares for are dependent upon the generosity of someone donating their loved ones organ during a time of tragedy.
She said families who donate organs can receive follow up if they choose and there is no cost to them for the donation.
“Without them then all these patients that we try to take care of die,” Frazier said. “There’s no doubt about it.”
Until Liam receives the gift of a heart, his family will continue to embrace the motto that has provided them with strength, inspiration and hope: We believe.
Editor's Note: We found out just after posting the story that Liam did get his heart. He received a transplant at 4 a.m. Monday, July 25. We'll post an update when we know more. If you'd like to send the family a note, you may mail to: I-Love-Liam-Lyon