Saturday 22 October 2016

Little Kyle is thriving thanks to Temple Street's high-tech isolation room

Kyle O'Connor was born with a serious lung disease. But, his mother says he is getting stronger every day because he is in an high-tech isolation room, made possible by donations from members of the public

Joy Orpen

Published 13/04/2015 | 02:30

Edel Lally with her son Kyle O'Connor. Photo: Tony Gavin
Edel Lally with her son Kyle O'Connor. Photo: Tony Gavin

Kyle O'Connor is bubbly, adorable and outgoing.

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And like most toddlers his age, he loves to explore the world around him, but he also relishes lying in his mother's arms, enjoying his bottle. But that is where the similarity between him and other children ends - because Kyle suffers from a very rare lung condition.

This disease causes serious breathing problems, and the fact that Kyle is alive is thanks to the wonderful care that he receives from nurses and doctors.

Another factor may be the donations made to the Children's Fund for Health at Temple Street Children's University Hospital. Money from that fund was used to create three rooms for kids like Kyle, who need to be kept in isolation because they are at risk from cross-infection.

When the average child gets a cold, they may feel unwell for a couple of days and then it's back to normal. But for children like Kyle, a simple infection can become a huge problem, causing life-threatening complications. So when they are in hospital, they need to be in sterile conditions.

When Kyle's mother Edel Lally was pregnant for the second time, she knew that she was expecting twins. However, she discovered that it was not going to be an ordinary pregnancy. "I went for my first ante-natal visit to the Rotunda Hospital at 12 weeks," she recalls. "When I began to feel unwell, they discovered that I was suffering from a genetic thyroid problem. My heart rate was almost double what it should be. Talk about being in the right place at the right time!"

The pregnancy continued to be problematic and when she was in the third trimester, Edel was admitted to the Rotunda for observation. On January 30 last year, some 35 weeks into the pregnancy, she had an emergency Caesarean section. Kyle weighed in at a respectable five-and-a-half pounds; his brother, Liam, was three-and-a-half pounds. In spite of his tiny size, Liam managed on his own, while Kyle needed help breathing.

However, by Valentine's Day, all three were at home in Balbriggan. As time went on, Edel began to have "niggling" suspicions about Kyle. He couldn't hold his head up (unlike his twin); his breathing was laboured at times; he was feeding poorly and he was irritable.

Of course she took the babies (and her older son, Cillian) for regular check-ups. And although the twins were also seen by the local health nurse and a GP, no one could find anything obviously wrong with Kyle.

Then one Friday last August, the health nurse suggested Edel take Kyle back to the GP the following Monday to check his breathing. But she didn't want to wait that long, so she and her husband, Mark O'Connor, took Kyle to Our Lady's Hospital in Drogheda.

"One of the first things they did was put him on an oxygen saturation monitoring probe, and they immediately discovered he needed supplemental oxygen," says Edel. That was just the start. Initially, Kyle was treated for what they thought was a lung infection that had developed into pneumonia. He was also checked for a number of different ailments, including cystic fibrosis and heart and lung disease.

Eventually he was transferred to Temple Street, where they did a battery of tests. "They left no stone unturned," says Edel. "They needed to find out why his breathing was so laboured, so they checked his swallow and did a bronchoalveolar lavage, which injects salt water into the lungs then sucks it out so it can be analysed."

But even though a CT scan had showed Kyle's lungs weren't quite right, there was no obvious reason for the problems. Finally, doctors had no option but to do a lung biopsy. "That was the last thing they wanted to do," Edel explains. "It's a very invasive procedure for someone so small."

The biopsy showed that Kyle was suffering from neuroendocrine hyperplasia of infancy (NEHI). This is just one of many different lung conditions that fall into a general category known as childhood interstitial lung diseases.

NEHI causes the overproduction of cells (whose function is not known), as well as low levels of oxygen and serious difficulties breathing. Edel now understands why Kyle failed to thrive. "He was using up all his calories trying to breathe - he had no energy for anything else," she explains. "He was too exhausted to suck on his bottle and he was irritable because he was so tired."

Once a diagnosis had been made, Kyle was put on oxygen supplementation, day and night, and has blossomed, in spite of a bad lung infection over Christmas. He is still in Temple Street and hasn't been home since last August. His brothers hardly know him, as they are generally not allowed to visit because of the risk of infection. So Edel and Mark take turns being with Kyle in the hospital, or at home with the other two boys.

Edel has nothing but praise for the staff at Temple Street. "Everyone wants the best for their baby, but when it's out of your control, you want to be where you're going to get the best treatment, and for us that is definitely Temple Street," she says.

She also knows they are extremely lucky to have a purpose-built, state-of-the-art, negative-pressure isolation room for Kyle. It is one of three such rooms that have been built entirely from funds that were donated by members of the public.

"I can't describe what having a room like this means to us," says Edel. "It's literally Kyle's lifeline. It's helping him get to a point where he can get strong enough to go home. It's brought him on in leaps and bounds, and if it wasn't for the fundraising, this wouldn't exist."

Because they have seen first-hand what donations can do, Edel and Mark are totally behind Temple Street's Great Irish Bake campaign. It is being sponsored by Tesco, which will hold cake sales in its stores on April 17 to raise money specifically for a new neurology and renal outpatients unit at Temple Street.

Members of the public are also invited to host their own cake sales - and it doesn't even have to be on April 17, if that date doesn't suit.

Following the sale, you then send the funds raised to Temple Street. Details are available on its website.

In the meantime some very special people - 145,000 annually - including the adorable and now thriving Kyle, are getting the treatment they deserve, thanks to the generosity of people like you.

To register for Temple Street's Great Irish Bake, see or tel: (01) 878-434

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