After suffering heart failure in May, 16-month-old Beatrix Archbold is currently awaiting a heart transplant at Newcastle’s Freeman Hospital. Scott House, The Sick Children’s Trust’s ‘Home from Home’, is ensuring that parents Terry and Cheryl – from Burnopfield, Co. Durham – can be by her side throughout her ordeal. Dad Terry tells us their family story.
Beatrix Archbold. (C) Terry Archbold
When Beatrix was born in January 2021, our whole family were overcome with joy. It came three years after we suffered a heart-breaking tragedy when Isabel, our second daughter, was stillborn in 2018. As you can imagine, Bea’s safe arrival came with both joy and a huge sense of relief.
In May of this year our lives were once again turned upside down. We returned from a family holiday to Disney World in Florida to find that my wife Cheryl and our eldest daughter Eliza, who is 11, had tested positive for coronavirus. When Bea – a happy and healthy one-year-old who had displayed no worrying health concerns prior to this moment – went off her food and became overwhelmed by fatigue, we assumed that she had also contracted covid.
After developing a neck rash, Bea was taken to A&E at the Queen Elizabeth Hospital in Gateshead. I thought I’d be picking her up again later that day, but that all changed when doctors identified a heart murmur before x-rays revealed that one side of her heart was enlarged. Things went from bad to worse when, on 11 May, Bea suffered heart failure. She was quickly transferred to the Freeman Hospital in Newcastle, where she went into cardiac arrest.
We couldn’t believe what was happening. With her heart failing, Bea underwent major heart surgery to fit her with a Berlin Ventricular Assist Device, an air driven pump which takes over the work of one side of the heart while the other continues to work naturally. While it pulled her back from the brink, it has been confirmed that she needs a heart transplant so the device will remain in place until, hopefully, a donor heart becomes available.
Beatrix with dad Terry. (C) Terry Archbold.
A ’Home from Home’ at Scott House
The past few months have been a whirlwind, but thankfully the support of The Sick Children’s Trust and their Scott House ‘Home from Home’ has considerably eased the burden. It was the staff at the hospital who told us how we had a place to stay at Scott House, with this wonderful charity giving us a room just a five-minute walk away from Bea’s ward, free of charge.
“The biggest gift anyone can give is time, and that is something that Scott House and The Sick Children’s Trust have given us in abundance. When you are facing the prospect of potentially losing your little ‘un, you want every single second to count. That is why what The Sick Children’s Trust provides is so valuable to families like ours and others too.”
Scott House has become a sanctuary for us, a place away from the beeping machines on the ward where we can regroup. Also, the ability to speak to other parents who are in a similar situation to us has been invaluable, allowing us to comfort each other. It’s reassuring that The Sick Children’s Trust are there for us, especially as we are fully aware that Bea could be at the Freeman Hospital for an indefinite amount of time.
It seems strange to say this knowing how critically ill she is, but Bea is doing okay. Her amazing personality is starting to shine through again. At the minute, she is in a period of stability which needs to be maintained until the opportunity of a transplant comes up, but we are also acutely aware that it might never happen.
Raising awareness of child organ donation
Having donated Isabel’s heart for medical research in 2018 and considering Bea’s current situation, we have very much experienced both sides of the donor journey.
Isabel suffered from hypoplastic left heart syndrome, a condition unrelated to that affecting Bea. Being asked to consider donating Isabel’s heart was incredibly difficult, especially at such an indescribably upsetting moment as losing a child. There was so much emotion, but we made the decision to donate her heart to aid research into a rare, complex condition, to help find a cure so that parents wouldn’t have to go through what we did.
We now find ourselves on the other side, with our daughter needing a donor heart to have any chance of surviving. Currently there are around 204 kids across various hospitals in the UK waiting for a transplant of one kind or another, but there are only around 50-60 child organ donors a year. The numbers are frightening, but we must stay positive.
Working closely with the NHS, we are doing everything we can to raise public awareness. We need people to have the conversation and ask themselves if they would accept a donor organ for their child? And would they be prepared to give that same gift to another child should tragedy strike?
Whichever way Beatrix’s journey goes, the ability to be onsite pretty much all the time has given us so much extra time with her, allowing us to make memories that we wouldn’t have had otherwise. The gift of time is invaluable, and we cannot thank The Sick Children’s Trust enough for that.
Terry Archbold, Beatrix’s dad
To read about the part played by The Sick Children’s Trust in the Organ Donation Deemed Consent Act, known as ‘Max and Keira’s Law’, click here.
To learn more about Organ Donation, please visit https://www.organdonation.nhs.uk.