Scott House and all that comes with it has been invaluable
When Zariah was born, she appeared perfectly healthy. The only complication she had was an umbilical hernia, but apart from that she seemed fine.
At six months old, I had to take Zariah to our local hospital, the Wishaw General in Glasgow, for a routine appointment for her hernia. But on the way Zariah kept vomiting and I noticed that she was breathing very fast. At the appointment, I mentioned this to the doctor and asked for her to be checked over as I was concerned. The doctor suspected that Zariah had the adenovirus and advised me to take her to our GP. I refused to leave as I knew that something wasn’t right with my baby. I thought she was seriously ill and needed help.
I took Zariah to A&E at the hospital and I’m so pleased I did. Within moments of arriving, they hooked Zariah up to a monitor which showed that her heart rate was sky high. Immediately, they did a scan which revealed Zariah had a heart problem called dilated cardiomyopathy. Her heart was significantly enlarged, and she was in danger.
It was horrible to see my daughter deteriorate so quickly. Before that day, she had seemed well, so it was a huge shock to realise just how poorly she was. We were transferred to the Queen Elizabeth University Hospital and over the next three weeks we remained in hospital where the doctors worked really hard to get her better. And within that time Zariah really did come on leaps and bounds. So much so, I was told she was ready to come home.
I felt a mixture of emotions. While I was pleased that I could bring my baby home, I was also terrified. I was crying my eyes out with the fear that I wouldn’t be able to look after her complex needs and that something would go wrong.
We’d only been home for one day before my fears came to life. Zariah started screaming and clutching her chest – all I wanted to do was help her but I didn’t know how. I called an ambulance which rushed us to the hospital where a team managed to ease her pain. I was allowed to take her home again, but was even more scared than I had been previously.
Within 24 hours we’d returned to the hospital. Zariah had passed out and became unresponsive at home – so I called an ambulance and from that day we haven’t been back. We’ve been in hospital the entire time.
Again, I watched as my daughter deteriorated – but this time it was far worse. Zariah nearly died twice and was urgently put on a machine known as ECMO to help deliver oxygen into her blood and continuously pump it around her body. And I was given the devastating news that she had end stage heart failure.
The local hospital couldn’t do anything further for her, she needed to be transferred to a hospital in Newcastle upon Tyne, called Freeman Hospital which specialises in paediatric heart conditions.
I now know it’s one of only two centres in the country that can do specialist procedures like heart transplants.
There’s so much uncertainty when your child has a heart condition. Not only did I not know what the future held for Zariah, I was heading to a strange city and had no idea how long Zariah and I would be there for.
Thankfully when we arrived, I was immediately reassured that all I needed to be concerned about was Zariah as a charity called The Sick Children’s Trust, which runs free ‘Home from Home’ accommodation, had given me a room at its Scott House.
For all the time we’ve been in Newcastle, Scott House and all that comes with it has been invaluable. It’s been a very turbulent time for Zariah – one minute she’s getting better, the next she’s getting worse. When she first arrived at Freeman Hospital, the team managed to stabilise her enough so that she could be taken off ECMO. But since then, Zariah’s been through a lot more. She’s had a few operations, suffered a bleed on the brain and a stroke. And has also been put on a Berlin heart – a device which takes over the work of her heart. Once she went onto this, we knew her only chance was a heart transplant.
Now we’re waiting for a lifesaving donor heart to become available. And this wait is the worst I’ve ever known. I try my best not to think about how long it’s been or how long it may be. Because that’s torture.
Throughout all of this emotional turmoil, it has been such a comfort to know that I have a home at Scott House, just minutes from my daughter’s side. A place where I can go and sit away from the ward and take some time to get my head around the situation. A place where my mum can come to visit as support for me and Zariah. And a place where I can speak to other families who really understand all that I’m going through. I can’t imagine having to go through this alone.
Despite her ups and downs, Zariah loves life and is a happy little girl.
We just take every day as it comes. Because a heart could become available any day. I just hope it happens one day soon.
Leeander Barrett, Zariah’s mum.
After an agonising seven month wait, Leeander finally received amazing news: a donor had been found for her daughter. Since her lifesaving heart surgery, Zariah has made good progress.
Organ Donation Week 2023: After suffering heart failure last year aged one, Amelia Bolter has been a patient at Great Ormond Street Hospital since October 2022, waiting for a donor heart to become available. Amelia's mum Jodie - who arrived at Guilford Street House heavily pregnant but now has eight-month-old Blossom in tow - shares their story.
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