'They thought he wasn't going to make it' – Parents of 'miracle' boy (3) born with half a functioning heart

The parents of a three-year-old boy born with half a functioning heart has told of how their “miracle” son has battled through a number of surgeries, septicemia, pneumonia and a stroke.

Ger and Alva Doyle, from Balbriggan, Co Dublin, were told that their unborn son, Samuel has hypoplastic left heart syndrome (HLS) during their 20-week anatomy scan on 11 September, 2015.

The couple, who also have an older son with high functioning autism, had previously suffered four miscarriages.

When Samuel arrived two weeks early on 15 February, 2016, he was transferred from the Rotunda hospital to Crumlin Children’s hospital to prepare for an open-heart surgery called the Norwood. It was the first of three life-changing procedures Samuel would undergo.

Alva told Independent.ie,”At the 20 week scan we found out he only has half a working heart, hypoplastic left heart syndrome. At five days old, he had his first open heart surgery called the Norwood. He was very sick. I remember walking after the incubator, hysterical thinking it was like following a coffin. It was worst moment of our lives.

“That was the first surgery that saved his life. At five-and-a-half months he had the Glenn, which was the second one. There’s three procedures. The next one we’re hoping to do after Christmas, that one is called the Fontan,” she said.

Ger continued, “They said, ‘Look, something is not right here.’

“As doctors have to be, she was quite blunt. She just said out straight, without major surgery, when he’s born, he’ll die. That’s exactly how she put it. She described the operation, she described what he’d go through, she described the procedures. Even then, he only had an 80pc of surviving, there was still 20pc he wouldn’t survive. But, he’s a fighter, he’s a brave man. He’s been brilliant,” he said.

The couple were fearful for Samuel’s future, and the “discomfort” he could face following the operations.

“You just think how could this happen to us, is he going to survive, how long will he live for. First thing you think of is, crikey like, your son is going through a major operation. The pain, the discomfort he’s in, being in the hospital on his own, not being able to bring him home. The big thing is not being able to bring him home,  knowing he’s going to spend weeks in hospital,” he said.

After the first surgery, Samuel was critically unstable for 72 hours.

“They thought he wasn’t going to make it,” Alva said.

“They nearly lost him a few times in the surgery. Eventually he got through that. His vocal chord was paralysed after the first surgery. They severer a nerve, but that was just part of the thing.”

In June 2016, Samuel underwent the second surgery, called the Glen. Although the surgery was a success, doctors discovered that Samuel had developed pneumonia the next day. A few days later, Ger noticed Samuel’s scar was redder than usual. He had also developed septicemia.

After 20 days of being intubated, Samuel was transferred to the heart centre ward. The following week, he suffered stroke at 3am. An MRI scan later discovered that he had had experienced other seizure activity they didn’t know about.

Alva explained, “The second surgery, he flew through that. Then he got pneumonia, septicemia, and then he had a stroke just before we were going home. He has no symptoms after the stroke, apart from his motor skills are a bit slow. His balance wouldn’t be great.

“He really is our miracle baby,” Ger added.

Alva was close to turning 44-years-old while pregnant with Samuel. She said the couple felt that Samuel may develop Down syndrome, but never thought he would suffer with a heart defect.

“I thought because I’m older like, I’m 47 now, when I was pregnant with him I was 43 say, and I thought like if anything he’d have Down syndrome, you don’t think of the heart things. Before we went into the scan I said to Ger, ‘I don’t mind if he has down syndrome, he or she, as long as they don’t have a heart defect,” she said.

Ger added: “We have an older son too, and you think how it’s going to affect other people, how’s it going to affect him? Being a child with autism, you’d wonder how’s it going to affect him with all the to-ing and fro-ing, back and forth, not having his mammy and daddy there all the time.

“So our eldest son comes to mind, but also himself, if he’ll even survive because we actually had four miscarriages before that.

Now, at three-years-old, Samuel has just started in playschool. Alva and Ger are telling his story from a room in Crumlin hospital after spending the night in A&E. Samuel had croup, a common virus in young children.

“He’s started in playschool and everything, that’s why he’s after picking up this.

“He’s in a position now where he’s going to be vulnerable and that, he’s going to be open to all sorts of infections,” Ger said.

“It was tough at the start, but now that he’s actually kind of had the operations, he’s getting used to the medication, and the heart is functioning now, his symptoms have settled down a lot, it’s easier now.

“We have another surgery to come early next year. We’re kind of going to cross that bridge when we come to it. It can be tough sometimes because you have to be very careful with getting infections and things like that, and making sure he gets his medications because he’s on so many different medications a day. But he’s thriving. When you see him doing so well it makes things easier,” he said.

Just after Samuel was born, Ger was made redundant from a software company he had been working with over the previous 18 years.

Alva continued, “It is very hard, and money wise it’s very hard. Ger got made redundant just after Sam was born, he was going back to hospital and all that. He was going back to work then, and then he was made redundant. He got a lump sum, but that doesn’t last. Now he’s an SNA, and he loves the job.

“I love the job, it’s the best job in the world, but the wages are awful,” Ger added.

“I did do part time as a carer for the elderly, I wanted to work because I just needed a break at the time, but I just couldn’t. With the other fella having autism, he finds transitions very hard. He’s doing a lot better now, but we were just finding things really hard at the time.

“We do have Heart Children Ireland. It’s a great charity. We talk to the cardiac psychologist there, we only met her there a few weeks ago. She’s great. “

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