A fortnight in ICU for young Galway boy who developed rare syndrome

galway daily news Breda Ni Mhaoláin and Patrick Clesham with their children Ríona and Liam on their wedding day icu
Breda Ni Mhaoláin and Patrick Cresham with their children Ríona and Liam on their wedding day 30 August 2022

Breda Ní Mhaoláin from Leitir Móir has spoken about how her young son Liam spent more than a fortnight in intensive care after falling suddenly ill with a rare skin disorder over the summer.

When 3-year-old Liam developed small red spots on his neck and chest in July, the GP initially thought it might be chickenpox – but within a few days, he was receiving treatment in the ICU in the Children’s Hospital in Crumlin.

Speaking on Iris Aniar on RTÉ Raidió na Gaeltachta this week, Breda explained that Liam developed lesions everywhere on his body – on his face, hands, down his throat and under the lids of his eyes.

She said that he was in such pain and that it took them a few days to figure out what was wrong with him.

Breda explained that Liam had Stevens-Johnson syndrome, a very rare and serious disorder of the skin and mucous membranes.

She said that they had to put drops in Liam’s eyes every two hours, day and night.

“Every time the door would open he would say ‘no doctors no nurse’ begging me to keep them away from him, but I couldn’t.

“There was a danger he might lose his sight … he was in danger of dying really. He wasn’t eating or drinking, and one night they thought he might have sepsis. He suffered so much.”

Due to the lesions on the eyelids that were scraping Liam’s eyes, the doctors feared he might lose his sight, so he needed to have an operation.

Although the operation went well, the aftercare was very tough on Liam.

“If you saw him, it wasn’t a nice image. He had bandages on his eyes, and then another cover over his eyelids to hold the bandages in place, and he had stitches in his eyelids too. His arms were restrained so that he couldn’t pull them off.”

Breda said that she could hardly breathe, but when she was with him she didn’t want to be upset so as not to upset him.

“And you don’t want the doctors to be worrying about you instead of looking after the child. When I’d leave Liam, I would cry and cry, I couldn’t stop.”

She said at that time, her partner Patrick was unable to eat or sleep.

“And the worst of it was that I had spent almost a week in the bed with Liam, he wanted me to be beside him, but once they did the operation he had so many tubes and pipes attached to him that it was really hard to get beside him.

“And then on top of that he had so many lesions on his skin, if you touched him, his skin was coming off.

“So he didn’t want anyone touching him, so I couldn’t give him a little cuddle, he didn’t want kisses or for me to rub his hair. I couldn’t touch him. It was so hard because I couldn’t do anything to comfort him.”

But then, after a few weeks, Liam’s condition started to improve.

“He was hungry. The nurses asked me what he would eat, and I asked him, and he said pancakes! Everyone started running around looking for pancakes!

“The dietician found him two pancakes, and sure he only took two tiny bites of pancake, but that’s what he wanted. He started talking about things. I was playing music for him – Hit the Road Jack. He couldn’t move in the bed, but he was pulling his legs up trying to dance to it.

“Everything started to improve at the same time.  He was getting hungry. He wanted to play.”

He was moved downstairs to another ward, and could see a playground there outside, and that helped to encourage him to stand and to walk again.

Finally, on August 22, Liam was allowed to go home after spending a month in hospital, and he has been doing well since.

“There’s no defect or mark on his eyes, thank God. We have to be careful with him out in the sun, his skin hasn’t healed completely, it’s still quite red… If you saw him, you’d think he had been scalded or had bad sunburn.”

Just a week after Liam left hospital, Breda and Patrick Cresham married on 30 August in the Twelve in Bearna.

“We’re together almost 19 years,” said Breda. “We had picked a date in May, never imagining that something like this would happen in the meantime. So Liam came out on Monday, we came home on Tuesday, and the following Tuesday we got married.

“There were just 18 people there, we had a great day. Everyone was so happy to be together again for the first time since Liam had been sick … and everyone was delighted to see Liam.”

The family also has another party to arrange, because Liam turned four while he was in the ICU.

“26 July is his birthday. He doesn’t believe himself that he’s four yet because we didn’t have any little party for him yet, but we will.”