A Fort Hood soldier returned home early from a deployment in Europe to care for his family. His soon-to-be newborn son is facing an uphill battle.
The soldier's wife, Elisa Leasure, was at a routine sonogram at 20 weeks pregnant when she heard the news no parent wants to hear.
"They got another sonographer to come in and that’s when I knew something really wasn’t right,” Leasure said.
Leasure's son, Billy Jr., was diagnosed with Heterotaxy Syndrome -- a condition which affects 1 in 10,000 births where internal organs are misplaced or duplicated. Heterotaxy means "on the different side".
“My first thought is we have to temper our excitement because I know nothing about this disease and of course one of the first things you’re presented with is hey, you should strongly consider abortion,” Captain William Leasure said.
Billy’s heart developed on the right side of his body, known as right atrial isomerism.
“Rather than being upset like I was, because I was in tears, I just couldn’t think clearly," Elisa Leasure said. "His first thought was well we’ll research it and you know? Worse case scenario, instead of a football player, I’ll have a fishing buddy.”
Capt. William Leasure and his family found comfort in social media support groups. They had many questions. What were the baby boy's chances of survival? Is it wise to continue with the pregnancy? What will Billy's quality of life going to be like? What do some of the kids look like that have come out of this? Are they happy? Are they leading happy, meaningful lives?
It was a balancing act for the Fort Hood captain and his family.
After many late nights of research and FaceTime discussions, the couple made the decision to take Billy to Texas Children’s Hospital in Houston.
“I was overseas, I was without my family and that’s all I could really think about was, how can I get him the best care possible over here," William Leasure said. "Because like I said, you’re torn between the mission and you’re torn between your family.”
With dad deployed up until just a couple weeks ago, Billy Jr’s siblings have stepped up.
“I could be cooking dinner, doing chores, anywhere in between,” Shaeleigh Leasure, Billy's older sister, said.
And the children's help did not go unnoticed from dad.
“My kids are very resilient, I think military kids are very resilient and they took the news very well and I told them we have a plan in place,” William Leasure said.
In addition to Heterotaxy Syndrome, Billy also has congenital heart disease, or abnormalities in his heart, which presents a bigger surgical challenge for doctors.
“There’s no wall between his left and right ventricle, there’s a hole, a large hole and it’s too big for them to fix,” William Leasure said.
There’s no guarantee yet whether or not Billy's other organs will work once he’s born.
Billy Jr. will remain at Texas Children’s Hospital in Houston for the first 4 months of his life at least. He’ll undergo two open heart surgeries during that time span and doctors say it’s the most critical time for his survival. Billy's pulmonary artery alone is the width of a small piece of spaghetti.
“So these are all things they’re considering with his surgery and giving us expectations—how long will this heart last if we redesign it to pump blood in a different way—maybe 30 years, maybe 10 years, maybe 5 years,” William Leasure said.
Billy will undergo a third open heart surgery at 4-years-old at the Texas Children's Hospital, where Heterotaxy cases are seen frequently.
Through tough times, faith has kept the Leasure family going.
“We’ve prayed a lot,” William Leasure said.
Then, a trip to the Vatican boosted their spirits, where a priest prayed on Elisa.
“It was a soul-touching experience and it made it that much more special because it was something I’ve always wanted to do and to add this to it—it was emotional,” Elisa Leasure said.
Elisa's due date will be August 30 or 31. Elisha said Billy has been very active, and believes it is his way of telling his mom he's strong and ready to face the world.
All that is left, is for the Leasure family to welcome its newest member.
“I love him, I’m there for him, and he’s my little boy,” Elisha Leasure said.
The Leasure Family is saving the umbilical cord and the cord tissue. They tell Channel 6 the tissue has stem cells, which can be used to help Billy at a later time in his life if he has further health complications. The procedure costs nearly $2000 to $3000 to collect the cord and then an additional $300 to $500 per year to to store it.
Captain Bill and Elisa are using Cord Blood Registry. Due to Billy's situation, they are storing the cord free of charge.
For more information about Heterotaxy Syndrome, visit the Heterotaxy Connection website.