THE PARENTS of a ‘miracle’ baby boy have told how their happiness turned into heartbreak when he died aged just six months old – but how vital care from Acorns Children’s Hospice in Worcester meant they never felt alone.
Becky and George Brittain-McMitchell but said one devastating day turned their world upside down upside down and they were forced to make heart-breaking decisions that no parents should ever have to make.
They have shared Grayson’s story as part of Acorns Celebrate Your Star campaign, which gives people the chance to remember those who are loved and missed this Christmas.
“Grayson was our little miracle baby,” Becky said. “He was perfect, absolutely perfect. He really was the most beautiful baby, he looked just like a cherub.
“You could just watch him while he was sleeping, or when he was playing. You could just watch him for hours and you’d never get bored. Ever.
“He was our miracle, we tried to conceive for six years. We had a miscarriage at the beginning followed by years of infertility and failed IVF at the end, then six months later I fell pregnant naturally.
“Then one day, while we were changing his nappy, he just suddenly stopped breathing.”
In panic, Becky and George dialled 999 but by the time the ambulance arrived dad George had given rescue breaths and little Grayson seemed to be back to normal.
The family, who live in Kidderminster were still taken straight to A&E, and that’s the day Grayson’s frightening seizures began.
Becky said: “He went from being a normal, healthy baby in the morning to just having seizure after seizure after seizure. And they weren’t typical seizures, they were the kind where he would stop breathing.”
Frightening medical tests and investigations followed to determine the cause of tiny Grayson’s seizures before Becky and George were finally given the devastating news that no parent wants to hear.
The new parents were told their precious son had a very rare condition that affects only one in 40 million called Vanishing White Matter Disease.
Grayson was given only a short time to live – ‘days, weeks or months if he was lucky’.
Vanishing White Matter Disease is a genetic brain disease that affects the nervous system for which there is currently no cure. It is usually diagnosed in very young children, but can occur in adulthood, and is characterised by the degeneration of white matter in the brain.
Becky said: “It was at that point we knew we had a choice. We could either spend the rest of Grayson’s life in hospital with him, or we could do as much as we could do to equip ourselves to take him home and spend that time with him as a family.
“There was never a point – and when I say never point, I mean, not even a second – that one of us wasn’t with him. He was never alone.”
There were many magical memories with Grayson, and some of the family’s favourite moments were spent with him playing with his baby gym, bath times, reading story books together, and looking super cute in his ‘Babiator’ sunglasses.
Becky said: “Whenever you put a baby gym in front of him, he just had this look of mischievousness in his eyes. He always had a smile on his face, and you always knew that he was he was really enjoying himself.
“We bought a little ball pit, and it was like magic to him. There was a mirror on it, and he could see himself and I just remember the look of wonder. Everything about him just screamed happiness.”
She added: “We also bought him these cute baby sunglasses, and we took him out into to my mum and dad’s garden. He was so contented, and you could tell he really loved being outside.
“Every memory was our favourite. He was amazing.”
Sadly, as Grayson’s condition worsened, Becky and George made the heartbreaking decision about where he would spend his final days, choosing to bring him to Acorns for the Three Counties in Worcester, for end-of-life care.
By this time, tiny Grayson was having as many as 50 back-to-back seizures a day.
Becky said: “Acorns was phenomenal, and even now coming to the hospice feels like I’m coming home. They were able to make him as comfortable as possible there.
“It meant we could spend every single second with Grayson. You can tell that people at Acorns genuinely care – they cared for Grayson and they cared for us, and they still do. They have been so crucial and we were able to able to trust them completely.
“They even did our washing for us. We were able to shower every day, and it was almost like a luxury for us to be able to do that. We were able to take a bit more care of ourselves, which I think probably helped us to continue to care for Grayson the way we did.
“But we had really good times, there is happiness when you are at Acorns and we made some really magical memories. The animal man came to visit and the chef baked him a cake for his six-month birthday.
“Acorns made us feel less alone.”
Grayson’s condition progressed to the point where he had lost the use of his arms and legs. Heartbreakingly, beautiful Grayson finally lost the ability to smile.
Becky said: “Grayson laughed so much, he was just so talkative and I think the hardest thing was watching him go from this happy, vibrant baby to, bit-by-bit, just lose the ability to do something like smile then he lost the ability to even make a noise.
“That was possibly the worst thing about the condition. He was losing everything, but he knew it was happening.”
Grayson stayed at Acorns for five weeks before he passed away in the early hours of the morning in the loving arms of his dad George with mom cuddling him. Acorns dedicated nursing team supported Becky and George to say goodbye to their beloved son in their own time.
He was aged just six months and seven days old.
“When Grayson died, we just wanted more time with him,” Becky said. “The nurse came in and said, ‘you can spend as much time with him as you want. We won’t take him away from you’.
“They organised the cuddle cot for us immediately and helped us, so we were able to still be with him. We remained at the hospice with Grayson for a further week after his death, with him staying in the special bedroom.”
Becky and George are sharing their story as part of Acorns Celebrate Your Star campaign, which gives people the chance to remember those who are loved and missed this Christmas in return for a small donation towards the charity’s lifeline care for local families.
For each tribute, a beautifully handcrafted star will be hung on a Christmas tree at their nearest Acorns hospice. A second star will be sent to the individual making the tribute to display at home.
Becky said: “Trying to change the perception of hospices is really important, so if we can raise awareness of the work that Acorns does, and if just one person chooses to make a donation, that’s all because of Grayson.
“Celebrate Your Star gives everyone the opportunity to give to a charitable cause in his name and other children like him. Personally, it brings us so much comfort to talk about Grayson and to celebrate him at any given opportunity, and I like to think that he would be really proud of us.
“We’ve always said, it would be an injustice for us to give up on life, so to do things like this is our way of promising him that we won’t give up. We will make it through, and we will carry on, even on the days we don’t want to.
“Even though Grayson isn’t here anymore, we really want him to still be able to make a difference in the world.”
Becky and George are among the nearly 1,000 families supported by Acorns Children’s Hospice each year.
Acorns Children’s Hospice provides specialist palliative care for children and young people with life limiting and life threatening conditions and support for their families.
In the past year, the charity has cared for more than 730 children across Birmingham and the wider West Midlands, and almost 1,000 families, including those who are bereaved.
Acorns needs around £30,000 each day to provide its children’s hospice care, with two thirds of that amount coming from generous donations and fundraising by the local community.
This Christmas you can help Acorns be stronger together by dedicating a star as part of Celebrate Your Star.