Louisiana baby born with 'half a heart' proves to be a fighter

On Dec. 14, 2012, Katie Ryan gave birth to baby boy and named him Joseph. He was her fifth child, a redhead like several of his siblings. 

But he was different.

Joseph was born with half a heart.

That's how he likes to say it today, now almost 5 years old.

"He will tell you, 'I have half a heart,'" his mom said.

Katie remembers the moment she found out.

"When the pediatrician walked in ... I knew from the look on his face," Katie said. "I said, 'You're getting ready to tell me something I don't want to hear.'"

At 24 hours old Joseph wasn't holding his oxygen levels well. And the pediatrician had heard a heart murmur. 

The Natchitoches hospital contacted Christus St. Frances Cabrini in Alexandria.

"Any baby in Central Louisiana with a heart problem, they call us, we transfer and stabilize at Cabrini and then they go to Oschner (Health Network) if necessary," said Dr. Amar Nijjar, medical director and neonatologist at the Cabrini Neonatal Intensive Care Unit.

Joseph was transported by ambulance to Alexandria, and his parents followed behind in their car.

"We suspected a serious heart problem," Nijjar said. "With our partners from Ochsner we did a heart echo, which showed his left side of the heart had not developed at all." 

He was diagnosed with Hypoplastic Left Heart Syndrome, which is more common than many parents know.

The congenital defect is found in nearly one in every 100 children. And twice as many children die from congenital heart defects every year than from all childhood cancers combined, according to the Ochsner Health Network.

"That day is kind of foggy to me," Katie said. "... All I remember are the words 'severely underdeveloped heart.' My legs buckled a little. I had to sit down. I couldn't comprehend anything else they were telling us at the time."

It is one of the most complex heart defects and occurs when most of the left side of the heart doesn’t develop as it should during pregnancy. About one in every 5,000 children will develop this.

"It's a rare condition," Nijjar said. "It's a deadly condition unless taken care of quickly. Many babies don't make it." 

Nijjar said time is key, making the relationship between hospitals — like the one that got Joseph from Natchitoches to Alexandria and eventually to New Orleans — all the more important.

"This impresses upon me the need for collaboration so there is seamless care for the baby from transport to stabilization to care," the doctor said. "So if the baby has a chance it should be given to it."

At one day old, Joseph was airlifted to Ochsner Medical Center in New Orleans to prepare for open heart surgery.

Katie and her husband, Jeremie Ryan, drove to New Orleans, again separated from their newborn son, and arrived about 3:30 a.m. Another test confirmed it was HLHS.

The Ryans were presented with three choices — transplant, a three-surgery series or "comfort care." That means making him comfortable until he passes.

"That was not an option for us," Katie said. "We did whatever we had to do for him."

They went with the surgeries.

Joseph was 17 days old when he had the first of the three in the series — the Norwood procedure, the bidirectional Glenn procedure and the Fontan procedure.

Before the first one on New Year's Eve, the couple made the difficult decision to go home to Many for a few days at Christmas to be with the four older Ryan children. At the time their ages ranged from 2 to 14, and they were scared, too.

"It was hard to leave him, but he was in good hands and stable," Katie said. "We knew after the surgery the work was going to be harder. ... (Going home) allowed us to get a hold of everything and go back a mission and a purpose, to go back stronger."

After his first surgery, Joseph's chest was left open seven days.

It was hard and scary to see him intubated and hooked to enough equipment to fill a room, his mother said.

"The day of the surgery was a very, very long day," Katie said. 

It would not be their last difficult day.

Joseph had a chest closure a week later and a reflux and G-tube surgery by the end of January.

The family spent a month in and out of the hospital before they brought Joseph home. But a Staph infection and virus sent him back to the New Orleans hospital before his next round of surgeries.

He underwent a pre-Glenn heart catheter and the second major surgery, the Glenn, in April 2013. He had the final of the three, the Fontan, in June.

"He's just the toughest, strongest and greatest little person we know," Katie said. "After all he's gone through, he has such a gentle and sweet and happy little spirit."

Dr. Ivory Crittendon, a pediatric interventional cardiologist at Ochsner in New Orleans, feels the same way about Joseph. He used to call him "the angry little redhead."

"From the moment he was born, he was a little fighter," the doctor said. "... He's a small kid but he fights like he's 150 pounds."

Now the focus is on follow-up.

Joseph is down to a few medications he takes multiple times a day. Katie said the goal is to wean him off of them, while he will take a daily aspirin "forever."

"Most of the follow-up is that we make sure we continue to monitor his heart function, make sure he's getting his immunizations, eating healthy and then just try to normalize his life as much as possible," Crittendon said.

For Joseph that looks a lot like football.

"Football is his entire life," Katie said. "He loves the Many Tigers (that his dad coaches). He lives for Fridays when we have a game."

This love for football makes Katie happy and worried at the same time. She knows he might not be able to play one day, but she doesn't know that for sure.

"We know in the back of our minds he's different from everybody else," Katie said.

But there's plenty about Joseph that's just like his five siblings and anyone else.

"He goes to school, plays on the playground and does just about everything other kids do," she said.

Crittendon said when they talk they try not to focus on Joseph's heart disease and more on what his life is like as a child.

"So much of his early life has been about his heart disease, and we don't want him to think it's a disability," the doctor said.

The Ryans have gotten close with their medical team in New Orleans as well as with other "heart" families, those with a family member with a congenital heart defect.

Katie leans on other "heart moms" with sons close in age to Joseph.

"It has not been easy," she said. "It was very hard in the beginning because it came as such a shock. For a couple weeks it really, really shook my world — just being able to get a handle on what was going on and that it was real."

It helps to share these experiences — the good and the bad — with a community, and it reminds Joseph that he's not alone.

"Joseph will say 'I'm not the only one with half a heart,'" Katie said.

Crittendon calls Katie an ambassador for other heart moms, always asking questions for her family and for others. 

"I appreciate all she's done for us," he said. "... She can speak life into them in a way I can't."

As Katie puts it, "Nobody understands what you're going through except ones who have walked it, too. I don't know what I'd do without them."

Follow Joseph's journey on his Facebook page under "I HEART Joseph Benjamin."

 

 

 

 

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