‘When your child isn’t here anymore, memories made are even more important’
When grieving parents Emma and Dan Garner had to say goodbye to their baby boy Thomas, Claire House helped them create lasting memories of their precious son.
Here they share their painful story and explain how the children’s hospice was there in their darker moments.
Mum Emma says: “We knew from my pregnancy scans that Thomas had an exceptionally rare congenital heart defect.
“He quickly went downhill after he was born and was admitted to the Intensive Care Unit (ICU).
“Nine days later, Thomas was transferred to Alder Hey Children’s Hospital and that is where Claire House got involved.”
Thanks to the children’s hospice, the couple have special memories of their second son Thomas, which are even more important now he’s no longer with them.
Dan says: “The Claire House team allowed us to take time out of a clinical setting, as much as you could, to normalise the time we had with our baby.”
Emma agrees: “Claire House would bring a slice of normality into something that was completely abnormal.
“In intensive care, you can’t hold your baby, you can’t play, you can’t sing songs or do anything you would normally do at home, but Claire House made that happen.
“It was never going to be normal, but they made it so we could have that togetherness.”
Claire House was also there when the parents suffered the agonising heartbreak of withdrawing his care before he died in April 2018 – six months after he was born.
Emma says: “Thomas had open heart surgery, bowel surgery, chest surgery, lung surgery and all these things to just try and get him off the ventilator.
“Thomas’s heart was repaired as much as a heart can be repaired but unfortunately six months of ventilation caused him to have chronic ventilator induced lung disease.
“He had sepsis multiple times and the last time he couldn’t come round. We were left with the horrendous decision to withdraw his care.”
Claire House was with them every step of the way, explains Emma.
“They talked us through the process and carefully prepared us to think about what our options were. If we had faced that completely out of the blue, we wouldn’t have been able to focus our attention on giving Thomas the love and comfort he so needed from us, as we’d have had no idea what to expect and what was going on.
“People talk about a ‘good death’ and a ‘bad death’ and Claire House allowed us to give Thomas a good death.”
The family brought Thomas to rest in one of the hospice’s Butterfly suites for practical support and to make lasting memories.
“We turned up at Claire House as a shell of the people we are and we were given a home,” says Dan.
“We didn’t have to think about the outside world. We were given all the help for what comes afterwards, from registering his death to planning his funeral.
“We were given the space to come to terms with our new reality.”
“Claire House gave us lasting memories,” says Emma. “We did nothing normal with Thomas until he came to Claire House. We bathed him and even held him for the first time without wires attached.
“We had never seen him not intubated, without a tube up his nose. We had never seen his face, not even at birth, and we got that opportunity at Claire House.
“When your child isn’t here anymore and memories are all you’ve got, those memories are even more important.”
Claire House continues to offer the family bereavement help.
Emma says: “I don’t know how people cope without the option to have anything like we did.
“I still have counselling support from Claire House five years later. We have both accessed the parent support groups. Claire House is still there for us.”
“I think very few people can imagine what it is like to lose a child, unless you have gone through it,” says Dan. “It is nothing you can prepare yourself for.
“Being able to access support groups and meet mums and dads who have been through that experience, even if our stories are different, is so important.
“You are not judged or don’t have to pretend things are okay when they are absolutely not. You cannot repair what has already been done and these support groups and friendships have become very important.”
He adds: “Emma and I have grown up knowing about Claire House, but no one thinks you might need it.
“When you see it from the other side, you truly realise how invaluable Claire House is and it is great support system to have.”