Thomas' brave story shared as parents back Hope House fundraising campaign
A couple whose son was born with a life-threatening condition have shared their emotional story to help raise funds and awareness for the region's children's hospice charity, which supports their family.
Ed Gilmore and Helen Waterfield from Denbigh already knew lots about the charity which runs Hope House in Oswestry and Tŷ Gobaith in North Wales, because it had cared for the daughters of close family friends.
But they never dreamed they would need the help of its nurses for their own son Thomas.
Thomas was born two years ago after Helen had sailed through her pregnancy with no indication that anything was wrong.
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.
Ed said: “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.
“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 was eventually 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.
Helen said: “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 in case 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 Children’s Hospice care team.
They first met the hospice’s neonatal link nurse Paula while Thomas was still on the neonatal ward.
Ed recalls visiting Tŷ Gobaith at Conwy for the first time, saying: “We thought it was going to be really clinical, because we were used to hospitals with nurses each responsible for lots of children. But it was completely different, with one to one care for Thomas.”
Helen said: “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.
“Respite care at Tŷ Gobaith is a real opportunity to recharge our batteries. 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 and want to look after him when he goes to Tŷ Gobaith and that feels so special.”
Ed added: “We really trust the team 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.”
Thomas’s Christmas Appeal is aiming to raise £100,000 to help provide even more respite care for seriously ill children like Thomas and support for families.
Central funding covers 20 per cent of the hospice’s annual care costs, with the remainder coming from donations and fundraising.
Anyone who wants to support the appeal can do so at hopehouse.org.uk/thomas or by calling 01691 671999.
