Mother of South Shields teen who needed lifesaving transplant from brother reveals ongoing isolation of Covid pandemic
“The world is dancing, drinking and having fun, but we can’t.”
A South Shields mother whose daughter was on life-support following a bone marrow transplant has revealed the ongoing isolation caused by Covid and the challenges faced by families with seriously ill children.
Bukie Adebola-Ezeh’s daughter Vanessa Ezeh, 17, suffers from sickle cell anaemia and required a transplant after becoming seriously ill. The donor who saved Vanessa’s life was her seven-year-old brother Henry-Jesse Ezeh.
Bukie’s second daughter, Ashley 15, also suffers from the same condition.
Bukie, 44, said: “During the pandemic it was incredibly hard. As a family we have been so scared of Covid coming into our home because it will kill our girls. Living in such fear was something we’d never experienced.
"My husband had to leave his job and I had to change my own work to online so that I could do it by Vanessa’s bedside.”
Following the transplant there were extreme restrictions on hospital visits and social contact to minimise the risk of Covid being transmitted to Vanessa and other patients.
Bukie added: “In the transplant unit we were not allowed to see anyone except for my husband who had to drive 20 minutes every day to the hospital to bring me food. For the first four weeks after her transplant I never left the room 24/7.
"I was unable to see my other children and it was so hard to show them any priority when I was living next to Vanessa and sleeping on a folding camp bed. I felt so isolated.”
Anxieties became heightened further when, due to complications during Vanessa’s recovery in hospital, she suffered severe strokes and was rushed into Intensive Care and placed on life support.
Bukie said: “Vanessa’s blood pressure was very high and doctors rushed her to Intensive Care. No one was expecting it and suddenly she was in a coma on life support.
"Doctors told me they were trying to save Vanessa’s brain and I was able to call my husband and my sister to be with me. It was terrifying. For four days she was in a coma and on April 13 she finally opened her eyes.
"Three days later I was back on the transplant unit with her in strict isolation for another month before finally bringing her home.”
As lockdown restrictions have eased and many families begin to return to some semblance of normality, Bukie and her family have had to continue to live in isolation over ongoing Covid concerns for their children.
She said: “I’ve heard people say Covid brought people together, but not for us. Before Vanessa’s transplant we were locked in a house looking out at the world going past us. We couldn’t go to the park or out with friends.
“Unlike her siblings, Vanessa still can’t go back to school and she has not seen any of her friends since last year. It's been over 20 months since she last saw anyone her own age. Now the world is dancing, drinking and having fun, but we can’t.”
Bukie and her family are just one of thousands families with seriously ill children across the country who’ve had their lives turned upside down and continue to live with the isolation of Covid.
A survey by the charity the Rainbow Trust, who provide support for Bukie and other families in similar situations, has revealed the full extent of the impact of the pandemic.
The greatest concern for families – 62 per cent – was the fear of their child contracting Covid with 47 per cent of respondents also saying their financial situation had been negatively impacted by the pandemic.
Other responses showed that 52 per cent of families now feel more isolated, 51 per cent more fearful for their child and 40 per cent more exhausted.
The charity’s Chief Executive Zillah Bingley said: “Our latest survey is another clear illustration of just how much harder life has become for these families due to the pandemic. The families who responded to our survey are telling us they feel more fearful and isolated than ever before.
"They’re exhausted and their mental health is worse. These families need to be heard so they know they’re not alone in trying to cope with their current reality, navigating the frightening world as we unfurl from the pandemic.”
The Trust has provided a vital lifeline for Bukie with their support worker the only only external visitor currently allowed into their family home.
Bukie said: “For us, our Family Support Worker Sabrina has been lifesaving, empowering and our light at the end of a tunnel. Recently she took all the children out to the park and gave me precious time to myself – it was the first time I had been on my own for 18 months.
“Sabrina is the only visitor we let into our home and watching her with Vanessa and my other children is beautiful. She also listens to me and hears me - it’s amazing to have someone to talk to.
“For many minority families like mine, accepting charity help is hard, especially during a pandemic, and many are struggling. So many people say they’re going to help families like mine but they don’t.
"To actually have someone helping us with no agenda and no judgement at such a difficult time has really been life changing.”
There are an estimated 86,000 children in England with life-limiting or life-threatening conditions. Visit the charity’s website to find out more about their work and the support on offer.