Gethin Channon is three and a half and the adored son of Siân and Rob, and beloved little brother to eight-year-old Ffion.
The family live in Swansea and have been using Tŷ Hafan children’s hospice for three years after a traumatic birth left Gethin starved of oxygen.
“Siân’s pregnancy was fine,” says Rob, “but Gethin’s birth was difficult and he suffered from Grade 3 HIE – hypoxic ischaemic encapalopathy. He was born limp and the medics were just about to step away from him when he suddenly took a breath on his own.”
Gethin spent a month in the Neonatal Intensive Care Unit (NICU).
“At first we were told to think about life support,” says Rob, a software engineer for a London-based law firm. “We were told it was unlikely that Gethin would survive the week, that he was unlikely to ever be able to go home. It was all bad news.
“For two weeks we didn’t think there was any life in him. Then an Occupational Therapist got me to talk to Gethin from the other side of the bed and he turned his head to hear me better all on his own.”
Says Siân: “I walked in and Rob was so excited. It was the first time that Gethin showed he had recognised Rob’s voice, he then did the same for me, it was an incredibly emotional moment. When Ffion started singing ‘You Are My Sunshine’ to him on her visit at two weeks that was it. We could see that he knew her – he just knew. She’d called him Buzz when he was in my belly and sang every day to him.”
“Suddenly then, we were told ‘ok you can get ready to go home’,” says Rob. “Looking back, I think we were in shock for most of the time, and of course, Ffion was suffering as well. But we just wanted to get our little man home and see what life was going to be.”
“While we wanted Gethin home more than anything, the reality was it was absolutely exhausting,” says Siân. “Gethin needs 24/7 care – there was the risk of asphyxiation in his cot, he is unable to swallow, he needs regular suctioning, feeding during the night and meds to be given in the night. Rob was doing the night care. I was looking after him during the day. We did not stop.”
Gethin’s consultant introduced Tŷ Hafan and palliative care to them.
“We thought, oh no! Hospice?! Does this mean he’s going to die?” says Rob. “But it was explained to us the kind of support that Tŷ Hafan offers and that it is a joyful place. We took the plunge and visited and we could not get over the energy of the staff and hospice. It just made us feel really excited to be a part of it.”
The Channon family’s first visit to the hospice was when Gethin was three months old.
“He was a bit shouty,” remembers Rob. “We went swimming in the hydro pool for the first time and it was wonderful to see him relax and float. He’s been a little merman ever since. Everyone doted on him. Everyone was fighting over him and a little girl who was born the same time – who was going to get the cuddles in! We spent most of our days with Gethin but actually it was the first real rest we’d all had since he was born.”
The family started to visit Tŷ Hafan regularly and since March 2021, Tŷ Hafan has become even more central to their lives. In fact, they say that without the support of the hospice they ‘simply would not be able to cope.’
Rob explains. “Since March 2021 Siân has been fighting breast cancer. I know that without Tŷ Hafan we simply would not be here any more, we would not be able to cope. It’s as simple and as fundamental as that.”
Since Siân’s diagnosis Tŷ Hafan has supported the family with three-day stays for Gethin every month. Plus Ffion benefits from specialist play therapy to help her to deal with her worries about the health of not only her little brother but also her mum.
“Ffion has had to deal with so much, at such a young age” says Rob. “But she is Gethin’s biggest supporter.”
Ffion also benefits from music therapy at Tŷ Hafan and loves to join in the monthly SuperSibs sessions for siblings of children with life-shortening conditions. Both of the children have also enjoyed music therapy, and taking part in the community hubs run by the play therapy team.
“Ffion loves Kelly-Jo and all the other children in the group,” says Siân. “She can go to the hospice and go crazy. Be a kid. It’s brilliant for her, she absolutely loves it and is doing so well.”
“And as for Gethin,” says Rob, “he is funny, bright, cheeky, keen, determined, gorgeous! He is non-verbal but nevertheless he is very communicative. Our son is a fiercely intelligent little boy with a big personality and just wants to play like any other three-year-old. He wants to play with crashing cars. He wants his version of rough and tumble play.
“Gethin has got a proper belly chuckle and loves to steal my glasses!” says Siân. “He also has a standing frame and he’s very happy to chase his sister up the street or have her push him on her roller skates. He is a very determined little boy and has a lot of potential. He strives every day to prove all the early predictions wrong. We could be prouder or more amazed by our children, or more thankful to Tŷ Hafan for the continuing support.”