Glengormley mum opens up on baby’s numerous health issues after spending weeks in hospital

-Credit: (Image: Submitted)
-Credit: (Image: Submitted)


A Glengormley mum has opened up on her baby's health conditions as thanks the healthcare staff who have supported them so far.

Ursula Fuller's son Tommy, who is now six months, has a number of conditions including a hole in his heart, tracheomalacia, lung problems, feeding problems, and his stomach is "upside-down".

The Co Antrim woman says the child, who had a nasogastric (NG) feeding tube placed at seven-weeks, is currently vulnerable and can't mix with other children, but says how he is "all smiles" and "a great wee baby".

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The 37-year-old told Be: "Tommy was born at 37 plus four weeks, with just a bit of jaundice. Nothing was overly wrong. It wasn't a big deal and he went home, it cleared up.

"He kept crying and crying and crying and he never slept, and he was always vomiting, and I always thought there was something wrong but the healthcare visitor told me it was colic and stuff and other professionals were saying 'it's colic, it's this, it's that', and then I took him to the doctors when he was seven weeks.

Tommy -Credit:Submitted
Tommy -Credit:Submitted

"I was breastfeeding, and I said, 'Look, there is something wrong with this child. I think I'm eating something and it's setting him off'.

"She checked him over, and he got rushed straight over to the hospital. He had something wrong with his heart. The doctor picked up like a bad heart murmur."

Ursula added: "In the hospital, they said, 'Does he always breathe like that?' and I said yes, and he turns funny colours, like very mottled skin, and he'd go like an ashy grey colour.

"They said there was something wrong. They did loads of tests. [We] were in there for nearly five weeks [around] February. It ended up that he had a hole in his heart, and a leaky valve.

"They checked his breathing, he had to be put under general and they did a scope and they said he has a severe narrow windpipe, so sometimes when he breathes, or gets excited, sometimes it sticks together and stops him breathing. He has baby lung disease and a lung deformity."

Ursula and Tommy -Credit:Submitted
Ursula and Tommy -Credit:Submitted

The Glengormley mum then noted that there was also "something wrong with his stomach" and says she then found out that Tommy's stomach is "upside-down". At seven-weeks he had his NG tube placed.

Tommy spent the whole month of February in hospital. He later had to also be admitted for two weeks in April and for the whole month of May.

Ursula said: "I took him over for an eye test in the hospital and they said, 'Is he always that colour?' And his lips were blue.

"[They did] his oxygen and it was only at 73 and wouldn't come up. He had to get on an oxygen mask and we had to run with staff... from one building to another and he was admitted straight away. And now he is on oxygen as well."

Tommy and his dad Thomas -Credit:Submitted
Tommy and his dad Thomas -Credit:Submitted

Tommy is now at home, and Ursula wants to thank the staff of the Allen Ward in the Royal Belfast Hospital for Sick Children.

She said: "They were just amazing. I stayed night and day the whole time. I never left his side, and they helped so much, and trained me how to do his NG tube.

"When he first went in, I was a bit, just seven weeks after having a baby, I was all over the place, they were really supportive of me. I would suffer from anxiety and depression and I think I got a wee bit bad in hospital because it's very hard to stay in hospital. You just don't know whether it's day or night. They were just so helpful, always so happy, it's a hard job they do and they just couldn't have done more for us."

The 37-year-old said that Tommy "is a wee chubster", and added: "He is massive. He weighs over a stone and a half now and he is in 12-24 months, and he's only six months.

"He is just all smiles. The hospital well-socialised him, he loves everybody, no strangers phase him. He's a great wee baby.

"He is eating his solids now and he gets NG-fed all his milk as he can't swallow the fluid."

Currently, Ursula takes Tommy to the hospital for appointments a few times a week.

The Co Antrim baby -Credit:Submitted
The Co Antrim baby -Credit:Submitted

She said: "He is on antibiotics for the foreseeable, three times a week because he's vulnerable, he's not allowed to mix with other kids until after winter for now.

"We are just monitoring it. They are just keeping an eye on him. His oxygen is still bad and he still NG'd. It's really just seeing how it goes once he gets a bit bigger.

"They are talking about surgeries and stuff like that but they are hoping maybe when he gets a bit bigger it might get better on its own, it's just really watching him."

Ursula wants to spread awareness of NG tube feeding, and says it would be useful if more places locally would stock NG tapes, which keep Tommy's feeding tube in place, as she says "they are so hard to get" outside of hospital.

You can keep up to date with Tommy's journey on Instagram via @tommy_and_his_ng_life.

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