WASHINGTON — In a month when people’s thoughts turn to matters of the heart, the Veale family of Washington is raising awareness that the heart matters every day.
Feb. 7-14 was declared Congenital Heart Defects (CHD) Awareness Week in many cities and states, including Washington and Indiana.
In conjunction with that recognition, Bryan and Jessica Veale created and distributed fliers to create awareness of this heart condition that’s present at birth. They also appeared on a local radio show to discuss the issue.
CHDs are a matter close to the Veales’ hearts because their 2 1/2 -year-old son, Eli, is affected.
“When he was born we thought everything was fine,” Jessica said.”We didn’t have any indications.”
When Eli was born, a simple, noninvasive pulse oximetry newborn screening, which can detect critical congenital heart defects, was not a required procedure.
As of Jan. 1, 2012, that changed and the procedure is now required at all birthing facilities in Indiana.
“Had it been done, his defects would’ve been caught earlier,” Jessica said, quickly adding there was no negligence on the part of doctors or the medical facility where he was born.
“I’m a nurse. I didn’t see any reason to do one, either.”
Once Eli went home, Bryan and Jessica began to notice a lot of odd little symptoms that didn’t raise any red flags individually. However, when they jotted them down prior to his two-month visit with Dr. Amy Campbell, they realized there were a lot of them.
Jessica said Eli vomited a lot, his stools were different, and he slept a lot more than his older brother Zachary, now 5 years old.
“The day before his two-month appointment, he wouldn’t eat,” Jessica said. “When they weighed him he was 7 ounces below his birth weight.”
Initially he’d been gaining, she said, then lost all that weight and then some in the month between his one- and two-month doctor appointments.
He was admitted to Daviess Community Hospital that day to check for gastrointestinal problems. During testing, it was determined he had an enlarged heart.
“That could be from a heart problem or secondary to a GI problem,” Jessica explained. “He was transferred by ambulance to Evansville to see a pediatric cardiologist.”
Eli was monitored throughout that night. His heart rate dropped and, according to Jessica, the medical staff had a hard time bringing him out of it. They did an echocardiogram and, after the doctor studied it, she got paper and pencil and drew a picture of a healthy heart and Eli’s heart to compare for the Veales.
“At 4 a.m. that morning was when we realized it wasn’t his stomach,” Jessica said.
They learned that Eli has a group of defects and, through this combination of defects, the right half of his heart didn’t develop so he lives with half a heart.
“It took me a long time to come to terms with ‘half a heart,’” Jessica said. “But that’s what it is.”
She said no real factors have been pinpointed that cause CHDs, but it is known that the heart forms so early in pregnancy that it’s formed before the mother knows she’s pregnant.
“He needed more help than he could get at St. Mary’s, so they flew him to Peyton Manning Children’s Hospital at St.Vincent’s,” Jessica continued. “Four days after his diagnosis he had his first open-heart surgery. The doctor told us most babies with this condition don’t live to 10 weeks.
“His condition was changing so rapidly É it was unbelievable.. They told us there was a 30-percent chance he wouldn’t come out of the operating room, but it was obvious to us if we didn’t do this he wouldn’t make it through the week.”
Though being a little older at diagnosis was a negative, Jessica said his age helped his chances of recovery. When he came out of surgery, his heart was beating on its own. He was in the Pediatric Intensive Care Unit for only eight days versus the anticipated three weeks.
But that wasn’t the end of Eli’s health issues. He didn’t want to eat, a common occurrence with “heart babies,” Jessica said. So Eli needed a feeding tube. They discovered he had a milk-protein intolerance, so he was put on a special formula.
Eventually his feeding tube was surgically implanted so he could be given extra nutrients and medications without a fuss.
“He’s been through physical therapy,occupational therapy and speech therapy,” Jessica said. “He has graduated all of those now, but he may need more later.”
The therapies were needed because Eli didn’t have the cardiac support to perform the skills on his own, she said. Motor skills such as holding up his head, rolling over, crawling and walking were delayed, but as of September he met the basic requirements for his age.
“He had to learn to work with his level of cardiac support to learn these things,” Jessica said. “Basically, he didn’t have the energy to do them until his therapist showed him ways he could l earn how to do it.
“The goal with speech therapy was to get him to eat. Most people assume speech therapy is only for speech problems, but in reality they do much more than that.”
In Eli’s case, it was to determine if he had swallowing problems or just wouldn’t eat due to an oral aversion. They determined Eli did not have any physical issues with eating.
“Oral aversions are common with heart kids because of so many medical procedures and time on the ventilator,” Jessica explained.
“After he started ta king the bottle regularly we still had to do tube feedings because the work it took for him to take the bottle actually used more calories than he consumed Ð even with his special, high-calorie formula. Once he took to the bottle, he progressed very well through the other stages Ñ baby food to soft table food to regular table food.”
A September 2011 surgery took blood from Eli’s arms, head and neck and rerouted the way it returns to the heart and lungs to get oxygen. His heart rhythm changed with that procedure and he needed a temporary pacemaker. During his next heart surgery, a pacemaker will be surgically placed.
Eli’s next surgery will reroute the blood from his lower extremities. That should further help oxygenate his blood, Jessica said.
“Honestly, for a heart baby, the doctors have said he’s doing well,” she added. “He’s not had a lot of illnesses. But even though he’s doing so well, there’s still a chance something could happen.”
Jessica said they met a family in the hospital whose child has CHDs similar to Eli’s. As they prepared for his third surgery, he “coded” because his heart couldn’t handle the procedure. He’s now on the transplant list. Eli may need a heart transplant someday, but it’s a complicated process as he must deteriorate to a point, yet be strong enough to survive the transplant.
“The series of surgeries he’s going through cannot fix him,” Jessica said. “What our goal is, is to make his heart as functional as possible for as long as possible.”
The Veales hope that getting Eli to his teen or adult years will give him a better opportunity to receive a heart and/or buy time for breakthroughs in heart medicine that could postpone a transplant ever longer.
“A transplant is another set of problems,” Jessica said, explaining that, at his age, it’s hard to get the size he needs.
In addition, a donor heart lasts only 7-10 years or 9-13 years, depending upon which study you read. Jessica said 10 years is a fair estimate.
“We’re very happy with where we are,the team we have,” she said.
Eli weighed 8 pounds, 12 ounces when he was born, got down to just under 7.5 pounds, then back up to birth weight at 4 months old.
“It took a long time,” Jessica said. “He’s two and a half now and is 26 pounds, so he’s back on the growth chart Ñ the low end. The doctors are pleased.
“We really don’t know his prognosis. As medicine is now, he’d need a transplant.”
She said the family tries to cross each hurdle as it comes and not worry about issues that haven’t cropped up yet. One challenge for the Veales is avoiding large groups of people, especially during cold and flu season, yet not being too overprotective of Eli.
“We try to protect him, but he needs to experience the world, too,” Jessica said. ‘We have a 5-year-old, so it’s not fair to him.
“It’s hard to explain to Zachary why Eli is ‘different.’ He was only 3 when Eli was diagnosed, so it’s basically all he remembers. He knows Eli has a sick heart and needs a lot of doctor appointments.”
She said Zachary assumed all babies had scars and feeding-tube buttons becau se “his” baby did.
“We involve Zachary in many aspects of Eli’s care,” Jessica continued. “Since our first night home with a feeding tube he got to help push medicines through the tube and program the pump. He knows to alert us if Eli’s pulling at it.
“Zachary has always had a very caring demeanor, and his unique experience as a big brother to a heart baby has only magnified that.
“We eat sleep and breathe this every day of our lives. Every day is CHD Awareness Day.”