Thomas’s dad Ed knew lots about Tŷ Gobaith because of the vital care we provided to the children of his family friends, but little did he imagine that one day his own baby son would need our help too. 

Thomas was born two years ago. Mum Helen sailed through her pregnancy with no indication that anything was wrong. His excited parents knew they were expecting a baby boy and had already decided to call him Thomas in memory of Ed’s dad and William after Helen’s dad.

On the day he was delivered by caesarean section, Helen had gone into hospital for what she thought was a routine ‘sweep’ to encourage labour to start. Things progressed very quickly and Ed was called at work to make his way to the hospital. Because Covid rules were still in force at the time, Ed was given scrubs and a mask, but told to wait in the corridor outside the operating theatre.

He recalls: “I wasn’t really sure what was going on but Thomas wasn’t breathing when he was born. I just saw him briefly as they took him away. Then he was on a ventilator and having seizures so they had his head wired too. It was clear he was really ill.”

Helen was also seriously ill with HELLP Syndrome, a rare but life-threatening condition that can affect mums after birth. It was the next day before she was able to meet Thomas. Two days later the tiny baby suffered a collapsed lung and had to be moved by ambulance to another hospital, with his concerned parents following behind.

His life was balancing on a knife edge

“Because of Covid, Thomas was only allowed one visitor at a time so Helen and I were sitting with him in shifts at the hospital – then he became so ill that they said we could both be there,” says Ed.

“His life was balancing on a knife edge and we knew he could go either way. He’d look like he was improving and then they’d take the ventilator out and his lung would collapse again. Things were changing hourly and there was just so much information to process. I don’t think we had time to feel anything.”

Thomas continued to fight and eventually was well enough to have an MRI scan and at six weeks old he was diagnosed with  Hypoxic-ischemic encephalopathy (HIE), a brain condition caused by a lack of oxygen before or during birth. More recently his parents have been told he may also have Cerebral Palsy too.

Says Helen: “We don’t know fully the impact the conditions will have on Thomas’s life going forward. He is tube fed and currently he can’t walk or crawl or sit up, but he uses his legs to push himself around on his back. He loves to follow our dog Bess around and she was the reason he began to move in the first place.

“Most of the time he sleeps through the night, but we need to be aware incase he wiggles and pulls out his oxygen. It is hard, but we’ve never been parents before so we don’t really know what is usual.”

Thankfully for the family they have been supported on their journey by the Tŷ Gobaith care team, and met our neo-natal link nurse Paula while Thomas was still on the neonatal ward. 

Ed already knew about our work, and how vital respite care could be, because the daughters of close family friends had been helped by Tŷ Gobaith in the past. But even he was surprised on his first visit.

“We thought it was going to be really clinical, because we were used to hospitals with nurses each responsible for lots of children. But at Tŷ Gobaith it was completely different with one to one care for Thomas,” says Ed.

Helen continues: “We walked through the door and straight away a nurse came to take Thomas. My mum lives next door to us and is brilliant at helping with Thomas and watching him for a few minutes while I pop to the shops but he is quite heavy already so not easy to care for and his health conditions are a lot for anyone to deal with. Since he was born we’ve only been out together for one evening, and that was to the pub down the road for a quick meal. 

“Tŷ Gobaith was a real opportunity to recharge our batteries, although I am always popping to have a peep at Thomas if I get the chance! The nurses are great and always urging us to relax or go out together and take a break while they look after Thomas.

All the nurses and carers love Thomas

“Thomas and I went to Tŷ Gobaith for another respite visit when he wasn’t sleeping so that was wonderful. I managed to sleep and recharge. The care team also took Thomas out for a day trip with the other children. All the nurses and carers love Thomas and want to look after him when he goes to Tŷ Gobaith and that feels so special.”

Ed adds: “On our next respite visit we are thinking of hiring a cottage nearby, so we are close but actually ‘away’. We really trust the team at Ty Gobaith to look after Thomas because they obviously have so much experience of dealing with children like him, and some with much more complex conditions too.

“The respite care is so important to us because we have had pretty much two years of us two trying to do everything with the help of Helen’s mum, plus me working. It pretty much takes two of us to look after Thomas and that will only increase as he gets bigger and heavier.

“We never thought we would need Tŷ Gobaith for our own family, but we are so grateful that it is there to help now.”

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