Andrew and Catherine Jeans’ baby daughter, Rose, died of Atypical Teratoid Rhabdoid Tumour (ATRT) at Tŷ Hafan just days after her first birthday. This is Rose’s story, told by her parents.
Our daughter Rose was born on February 11, 2019. Rose was perfect and a much longed for baby sister for our son Oliver, who was seven at the time.
When she was eight months old, we noticed something wasn’t right. Rose had a rash and she was straining to go to the toilet, we assumed it was a food intolerance, we started doing trials with different foods, but nothing worked.
Then, in November, we saw Rose had blood in her stools and they had become very loose. We took her to Prince Charles Hospital – they admitted her for a night and said it might be dairy intolerance. We went home and put Rose on some new milk.
But then came the screaming.
My mother had Rose while Oliver and I were out. She rang me and said: ‘Come home please, something just isn’t right with Rose’.
There was blood in her nappy and she was screaming in pain. It was awful. We went back to hospital there and then. Straight away they started running tests.
It was upsetting and worrying. You never want to see your child unwell. And for us this was another level of worrying because no one seemed to know what was wrong.
As we anxiously waited for test results, Rose started to refuse food and began sleeping for longer periods of time, only to wake up, fretting.
I’ll never forget it. I was cwtching Rose when a consultant burst through the door and told us that they’d found seven or eight bleeds on Rose’s brain.
We were sent to Noah’s Ark Children’s Hospital and an MRI scan revealed that Rose had a bleed on her spine, too. We could feel her getting weaker.
It was on 17 January 2020 that we saw our beloved little girl smile for the last time.
Rose started to have seizures, so they did a biopsy and fitted a drain. The next day she was put on steroids and we were told to take as many pictures as we could and to spend as much time with her as possible.
We knew we were losing her, but we had no idea why.
It was the day after they started her on the steroids that a consultant told us it was cancer. Rose was still in ICU and we thought they were her last days. But we had hope with her being offered chemo.
Rose initially showed a very slight improvement. Two days later, the doctors told us that this type of cancer is one of the most invasive and that Rose was not strong enough for even one more dose of chemo. It had already gone too far.
We were told it was just a matter of weeks. We got to Tŷ Hafan on 10th February and, within hours, the staff had organised a party for Rose’s first birthday the next day.
If Tŷ Hafan wasn’t there for us, I just don’t know what we would have done. What Tŷ Hafan gives you is priceless, they gave us privacy, but we could still have family around us for comfort and support. It’s a home-from-home environment where everyone matters. In hospital it’s different, it’s noisy, it’s chaotic and very clinical.
After a while we could see that Rose wasn’t very well at all. We were able to withdraw with Rose to our room and let everyone else be together and support one another.
We lost her in the early hours of Thursday morning, just days after her first birthday.
Tŷ Hafan is on a different level, they give you normality at the most difficult of times. We could not have provided what they did for our daughter. The care and love Tŷ Hafan showed us was amazing and we could just focus on making memories and being a family.
Being a bereaved parent – it’s such a lonely place to be.
But Tŷ Hafan is a safety net. Just being in a room with other people who have lost children, there’s a sense of belonging. They are there if you need it. You can dip in and out whenever you feel ready, but you are never forgotten. The support you get from them never ends.
We are the unlucky lucky ones. How do you make that decision where to take your child to die? It has to be an option for someone. Tŷ Hafan has to be there.
For us, we did not want to go home for Rose to die at home because you’ve got to live in that house afterwards.
Tŷ Hafan protects us and tells us: ‘It’s OK to feel what you are feeling.’ The fact that we are all as we are today is down to Tŷ Hafan. We didn’t have to deal with the worst time in all our lives on our own.