What is Esther like? She is cheeky, funny and beautiful.
Up until October last year, Esther was doing everything a toddler would normally be doing; walking, talking and eating. We never expected to spend any time in hospital, so it was a huge shock when she was diagnosed with severe combined immunodeficiency disorder (SCID).
Esther became really unwell with sickness and diarrhoea, she had also lost a lot of weight and some of her abilities to walk and talk. She was admitted to Ipswich Hospital and a brain biopsy showed she had astrovirus, a virus which is known to cause sickness and diarrhoea. It can also lead to much more serious illnesses if a person’s immune system is compromised. The virus caused Esther brain damage, and it took weeks of blood tests, scans, and assessments before we eventually found out about her immune system. SCID meant that Esther wasn’t able to fight off the virus which is why it got so bad.
Since last Autumn, Esther has been in and out of hospital and is now completely dependent on me and Dominic as she sadly lost all her abilities over time. We were sent from Ipswich to Addenbrooke’s Hospital in Cambridge for further treatment and as we tried to not let the shock overcome us and figure out a way forward, we were told about The Sick Children’s Trust. The charity runs ‘Homes from Home’ across the country giving parents like us a place to stay so that, as a family, we could be together. Being told we had somewhere to stay which meant we didn’t have to leave our child was amazing and the biggest relief.
The strain of the virus Esther has is rare and so eventually we were sent to Great Ormond Street Hospital (GOSH) in London, where we were devastated to be told Esther wasn’t likely would make it to her second birthday. Not being able to stay on the ward with our daughter after being told this was beyond extremally hard but fortunately once again we were given a place to stay by The Sick Children’s Trust. We didn’t know when we left Acorn House, the ‘Home from Home’ in Cambridge, that the charity had two ‘Homes from Home’ supporting families with children at GOSH. When we found out through the hospital’s accommodation office, we felt the same amazing relief overcome us just like before. We stayed at both the charity’s Rainbow and Guilford Street Houses which were just a short walk away. It was such a relief and a comfort to know we weren’t far. The most important thing was being close to Esther, which is what The Sick Children’s Trust made possible. Nothing was ever 100% on a day to day basis, we didn’t know what might or could happen each day, it was incredibly worrying and the charity’s ‘Homes from Home’ helped ease that.
Esther’s time in hospital would have been extremely challenging without having a place to stay. We couldn’t both stay on the ward and living over two hours away from GOSH would’ve meant travelling there and back every day. After a long day on the ward the last thing you want to think about is driving home leaving your seriously unwell child, never knowing what could happen overnight and not be close. All you want to do is stay and be together to support each other. We were very lucky that most nights we did have a place to stay, but there was a handful we didn’t.
Our three month stay in hospital fell over Christmastime. We didn’t have set plans to celebrate Christmas, though we would’ve followed tradition and gone to my family’s for lunch. We were in a little bubble at GOSH, focusing on Esther so Christmas was strange. Having said that the hospital really does know how to make a child feel special at such a hard time in life. She received so many lovely gifts, there were characters dressed up that came to the ward and waved through the window. It was lovely, albeit hard as all you want to do is be at home with your family. Luckily, in the lead up we had visits from friends, my dad and sisters including on Christmas Eve and Day. It was lovely to be able to spend a bit of time with them and for them to be with Esther. Before we know it, Christmas will be here again soon and I can’t wait to spend it with the people we love and make the most of it after last year!
They said Esther wouldn’t make it to her second birthday, but here we are. She’s doing so well and a completely different little girl to when we left GOSH in January. She is still very poorly and is on preventative medicines and antivirals. So far, her consultants think that the medication is working well but we don’t know if the virus is still there and just not ‘active’ at the moment or whether these drugs have killed it. The only way we would be able to find this out is by another brain biopsy.
Alongside this, Esther also needs a bone marrow transplant for her SCID to give her an immune system, but we are waiting to find a donor.
Esther has come further than anyone expected or thought which is amazing. We’ve had conversations with her consultants that we never thought we’d get the chance to, she is our little miracle and we’re so incredibly proud of her. She’s still very much the same as in still can’t walk or talk, but she’s doing more than she was in hospital and is so much more settled at home – she loves being home and listening to music!
We are so grateful to everyone at the hospitals for our daughter’s care and to The Sick Children’s Trust for making our time there easier by giving us a place to stay in both Cambridge and London. We know that times are tough right now and have been this year, but we have donated what we can to help another family stay together when their child is in hospital, and hope others do too.
Charlotte Herbert, Esther’s Mum