Little Beatrix has a new heart: the best Christmas present her family could ask for. Her parents Cheryl and Terry and 13-year-old sister Eliza are fronting Rainbow Trust Children’s Charity’s Christmas Appeal – No Family Alone – to help raise much-needed funds and awareness because they say they wouldn’t have coped without it.
The toddler from County Durham had a heart transplant in July after being kept alive by a mechanical (Berlin) Heart for 14 months on the organ donation ward at the Freeman Hospital in Newcastle.
Bea’s family are encouraging people to donate because Rainbow Trust supports families caring for a life threatened or terminally ill child, like theirs, across the country, including Essex.
“We hope you will find it in your heart to donate,” Terry said. “When all is overwhelming, impossible to manage, feeling that there is no light, a Rainbow Trust Family Support Worker like Monica can help.”
Harry is supported by our Essex Care Team
Harry was diagnosed with a life-limiting Mitochondrial disease called Leigh’s syndrome at 22 months old. Family Support Worker Abi supports Harry and his family.
Mum Lucy said: “Abi started providing support to my family at a really difficult time and from day one her support has been invaluable to me.”
“Initially I was nervous about how this support would work but Abi immediately put my mind at ease with her bubbly personality. Over that time Abi has provided myself and my children all kinds of support and she has helped me more than she will ever know.”
Abi helps the family in a range of ways, including organising days out, collecting Harry’s two sisters from school and looking after Harry to give Mum some respite and spending time with her daughters.
More about Bea’s Story
Rainbow Trust Family Support Worker Monica helped the family cope throughout Bea’s time in hospital and now at home.
Bea was rushed to A&E in May 2022, aged 15 months. Her parents thought it was Covid. But their daughter was in heart failure. Diagnosed with dilated cardiomyopathy after emergency surgery she went into cardiac arrest.
Her parents had to choose between no resuscitation or emergency surgery to connect Bea to a mechanical heart.
“That first night in A&E was the longest night of my life,” Cheryl said.
Cheryl did not return home for 16 weeks. She stayed in hospital accommodation and Terry would go home at 7pm and return at 7am.
“There was washing on the radiator, everything was left as it was that day when we left for hospital as if we were coming back,” Cheryl said.
Rainbow Trust
Cubicle 4, ward 23 was Bea’s home for 15 months. Coping with the very real fear that Bea might die, separated from Eliza all on top of a family tragedy in 2018 when their baby daughter Isabel died of an unrelated heart condition when Eliza was eight took its toll.
In Spring 2022, they were referred to Rainbow Trust, which has nine Care teams of Family Support Workers helping families practically and emotionally when a child is diagnosed with a terminal or life-threatening illness.
“I never wanted to leave Bea,” Terry said. “To have the trust and faith in Monica that I could leave and return to hospital knowing that she would be cared for knowing she was going to have fun was enormous. Without Monica Bea would be screaming when we left hospital. With Monica she would wave us off.”
Monica collected Eliza from school, took her to hospital, had fun with her providing much-needed respite. She would put Bea to bed in hospital so Cheryl could spend more time with Eliza and attend important school events.
“Without Monica that time once a week I had with Eliza could not have happened,” Cheryl said. “That was the most important thing for me. I was gifted that time with Eliza.
“Monica has been invaluable. She was able to come into hospital and the bond she has built with Bea was incredible. She is like family. Unless you have been in that environment you cannot explain to someone what it’s like. You’re living everyday with the reality that your child might die. Monica understands this.”
Berlin Heart
Watching tiny Bea kept alive on a Berlin Heart and endure multiple emergency surgeries to mitigate the risk of blood clots was immensely traumatic.
“There was a metre of pipe between Bea and the machine. She had to learn to walk again,” Terry said. “With pipes coming out from her abdomen dangling between her knees.”
“Every time she was out of bed was a risk. You could see the clots hanging on by a thread, she could have had a stroke.”
“Those were some of the worst times of our lives,” Cheryl said.
The financial strain of caring for a seriously ill child was also huge.
“It is crippling financially,” Cheryl said.
“We worry if we’ll have a house to come back to or a home to bring Bea back to. The bills don’t go away. You still need to pay everything, particularly with the rising cost of living.”
Donor
After donating their first baby daughter Isabel’s heart for research, they understand how hard it can be.
“If you asked someone if they would accept a donated organ, most likely the answer will always be yes, without hesitation,” Cheryl said.
“If you asked if they would provide the same gift to someone else, this reply can sometimes be met with uncertainty. The hesitation grows when it comes to considering your child being the donor of a lifesaving organ. When we were asked about donating Isabel’s organs initially I did not want to agree. We eventually did agree to donate Isabel’s heart for research and now I have seen how life changing this can be for families I would agree without hesitation. It could help save a life.”
Monica has been instrumental in helping the family settle back home.
“To be able to maintain that bond with Monica has enabled Bea to stop and settle at home because there has been a big transition between coming out of hospital and going home. Monica is that bridge between hospital and home. Bea didn’t know what a fridge was before coming home. It is like having a little alien on the moon and then landing back in New York City.”
They do not know what the future holds for Bea but this Christmas at home will be very special. They will also be organising something festive for their friends who remain on ward 23.
“Time is a precious thing when you do not know what is around the corner and Monica’s support makes that easier for us. We hope you will support Rainbow Trust’s Christmas appeal. Many other families like ours need your help right now.”
To support Rainbow Trust’s fundraising appeal and make a donation visit rainbowtrust.org.uk/christmas or call 01372 220083.
