Local teens with heart disease raising awareness, helping others
By KATE LUDLOW
For two local teens, the term Congenital Heart Defect might be a misnomer. Each was born with a heart issue that has caused them separate, but similar grief, and yet each has managed to turn their diseases around with surprising aplomb.
Caleb Spearman, a seventh grader at Liberty Hill Junior High, had an idea. Born with Pulmonary Atresia, a heart defect in which the pulmonary valve does not form properly, he had undergone three surgeries in his life and knew what a stay in the hospital was like.
“It’s really boring,” said Caleb. “There was sort of one room I stayed in. We had some entertainment, dogs would come around, Golden Retrievers. And a puppet show. Sometimes, a toy cart would come around. That’s where I got the idea.”
Caleb decided that he would organize a toy drive with donations going to Dell Children’s Medical Center. The only problem was, he hadn’t really asked his parents.
“I went to see Mr. (Chad) Pirtle (LHJH Principal). He was in a meeting. So, I walked out and called my mom. I just explained what I was doing. My mom said, ‘don’t you think we ought to talk about this first?’ I told her I was already about to talk to Mr. Pirtle. So she just said okay. She worries a lot,” Caleb said, laughing.
It was Caleb’s initiative that has garnered the most attention.
“The fact that a seventh grade student can organize this says a lot,” said Assistant Principal Annette Coe. “It shows a lot of drive and determination. People say a lot of things about kids today. Well, this brings your faith back in kids.”
Once permission was secured from the school, Caleb got to work making signs promoting the drive, and offering the homeroom class that collected the most toys an ice cream and cookie party. Monday night, Caleb and his parents made the cookies themselves.
“They’re chocolate chip,” said Caleb.
All the toys have been collected, 336 total, and Lisa Roberts’ homeroom class collected the most.
“I didn’t expect to have this much,” says Caleb. “It’s a lot. There’s a good variety.”
While Caleb’s life has been marred by surgeries and doctor visits, his daily routine is relatively simple.
“I take an aspirin every day. Only half my heart works. One of the sides doesn’t function properly,” he said. “The right or the left, I don’t know. I should probably know that. But, my blood needs to be thinner. That’s what the aspirin does.”
Caleb also visits the doctor every six months for checkups.
His physical limitations are huge for a young boy.
“I can’t play football. I can’t run. I had to stop playing baritone. I would get really short of breath. I can’t ride a lot of the rides at Schlitterbahn or Six Flags. The ones with the steep drops or that could go upside down. I can’t really do anything that will tire me out,” he said, adding that he has replaced those activities with the piano. “I love to play the piano. I play the fast stuff. The slow stuff can get boring.
“Sometimes, it’s scary. But I’m a Christian,” he said. “It always helps to pray.”
He takes comfort in turning his illness into an opportunity to give back.
“I think it is a responsibility. It’s doing good. I’m proud,” he said.
On Jan. 31, Caleb and his family attended a Liberty Hill City Council meeting where the Council proclaimed Feb. 7-14 as Congenital Heart Defect Awareness Week. The idea came from Jennifer Lepp, whose son Jacob Bryan was diagnosed with Subaortic Stenosis when he was two years old.
Jacob was born with a heart murmur. But at the time, it was nothing that the doctors were too concerned about. When Jacob was age two, the murmur became louder, and that’s when Mrs. Lepp says everything changed.
“He never turned blue, he never passed out. We were really thinking it wouldn’t be that big a deal. We were recommended to a cardiologist, and that was a four-hour appointment. We got the diagnosis that day,” she said.
Subaortic Stenosis is a lesion beneath the aortic valve that limits blood flow. The result is, in Mrs. Lepp’s words, “like squeezing a hose. It speeds up the blood flows which hit the leaflets (parts of the aortic valve) too hard, and over time it can cause damage or destroy the leaflets.”
When Jacob was two years old, he had his first open-heart surgery.
“He grew up always having a zipper, the scar from his surgery,” she said. They are so-called because they resemble a huge zipper down the front of the patient’s chest.
Since that time, Jacob has had two more surgeries, the last being in August 2011 when he received his pacemaker. A pacemaker works as a backup “electrical system” when the heart can’t or won’t regulate its beating.
“It’s basically a computer mouse with a long cord,” Mrs. Lepp said. “It’s got everything programmed in. We can do something called a Pacemaker Interrogation, which will give us all the information we need at that time. It’s pretty weird. Jacob has learned that he can ‘hack’ his heart. If he wants extra energy, he can breathe really fast, and the pacemaker will kick in. He’ll also use it sometimes to try to get out of cleaning his room. The first time he did it, it just scared the heck out of me,” says Mrs. Lepp, proving that young boys will do just about anything to avoid chores.
In 2007, Jacob’s family was eligible for a wish from the Make-A-Wish Foundation, and Jacob had what some might consider an odd request for a then 9-year-old boy. He wanted to meet late night comedian Stephen Colbert.
“We didn’t even know he watched the show. We would DVR (record) it, and apparently he would watch it later. He thought it was just the most hilarious stuff,” she said.
Mrs. Lepp said that Colbert and his staff were extremely welcoming.
“It was amazing. He got to watch the taping, and meet him afterwards. Even now, five years later, we still get cards and care packages. We get huge boxes of stuff. We have a shrine in our house built to Colbert,” she said.
Jacob also deals with serious physical limitations.
“We had to change his school, and essentially do a homeschool program. His last school couldn’t remember what his limitations are, so they had him out there running. It could have killed him,” she said.
“Last year was rough,” she added. “It was the first year it really hit Jacob that this is something that will always be there. It’s hard for them to realize at that age that anything can kill you.”
Mrs. Lepp said she and her family cope in various ways. “Jacob goes to a therapist. It’s good for him. I’m involved in a CHD support group.” Mrs. Lepp also writes about her experience dealing with CHD on her blog, http://scattershot.jenlepp.com
Mrs. Lepp also works toward mandatory pulse oximetry screenings.
“That’s what the proclamation was for. To raise awareness, and I write letters trying to get this screening process in every hospital,” she said.
Pulse oximetry screenings can be given to newborns before they leave the hospital.
“They’re so cheap and easy. It’s just a clip you put on a baby’s finger. It doesn’t hurt them. I don’t understand why it isn’t mandatory,” she said. For more information, visit http://pulseoxadvocacy.com.
“Most of the time, CHD is undiagnosed. Jacob has no signs,” she said. “You think about crib death, and how many of those babies could have had a heart condition. But you don’t find out until your child has died. That’s happens too many kids, too many kids.”