ETHAN’S CHRISTMAS AT GOSH

At just nine months old, Ethan spent his first-ever Christmas in hospital attached to a Ventricular Assist Device (VAD), or Berlin Heart, which kept him alive. Mum Roselelia shares their story with Pioneer.

When Ethan was diagnosed with dilated cardiomyopathy – a disease that affects the left side of the heart, making it harder for the muscle to pump blood around the body and which can cause heart failure – his dad

Richard was still recovering from a heart transplant himself. He’d been diagnosed with a different heart problem from his son’s – arrhythmic right ventricular cardiomyopathy, which affects the right side of the heart – eight months earlier.

So the family already had a lot to cope with when Ethan first came to Great Ormond Street Hospital (GOSH). Mum Roselelia describes how the family felt when they first arrived.

“The nurses, consultants and the heart team were dealing with two very distraught parents, but the support we received throughout was second to none,” she says. “That is exactly what you want when you are there with your poorly child, knowing you can put your trust in someone to save them.

“All of the heart team and the nurses were amazing. There were a few nurses on Bear Ward that we became very close with. Seeing them every day for a year, you create a bond. We would talk about everything and anything, including Ethan of course, but it was nice to know we made friends there too.”

CHRISTMAS AT GOSH

On Christmas Eve 2019 Richard and Roselelia, and her two daughters Alanah and Maia, all stayed in family accommodation near GOSH, which is funded by Great Ormond Street Hospital Children’s Charity (GOSH Charity). “We wanted to be there first thing in the morning to be with Ethan,” Roselelia says, “even if we had no idea what was happening! I made lots of buffet-style food and ordered loads of cupcakes to hand out to staff and other parents.

“Although we were spending Christmas at GOSH, eating buffet food and not a proper Christmas dinner, I still brought in a disco light and speaker and had all the kids dancing away in our bay! We were the loudest on Bear Ward. We even had some of the other children come and join us.

“We had the whole family around Ethan’s bedspace. Even though it was a little cramped with us all in there, it didn’t dampen our spirits and we had an amazing day regardless.

“It’s about being together that mattered the most. Just months before we didn’t even know if Ethan would be with us, so to be with him at Christmas made us feel so grateful.” Roselelia also fondly remembers how much they all used to love reading the kind messages sent in by GOSH Charity supporters on the paper Christmas stockings.

“We would read all the messages while queuing for food, which was a well-needed break. It was so lovely to read the kind words and inspiration – they really keep you going when you’re in hospital at Christmas with your poorly little one. Thank you so much to all the charity’s supporters for taking the time to send messages in.”

VISITING THE HOSPITAL DURING LOCKDOWN

In March 2020, when the first lockdown was announced, the one carer per patient rule was introduced at the hospital, which meant Roselelia had to spend months on her own in Ethan’s room while the rest of her family were at home.

“It was hard being on my own for four months during lockdown with Ethan and tiring as I was still working full time from his bedside. But I was determined to be there for him every day,” she says.

“The nurses were great in supporting us, but I felt constantly torn between not seeing my two daughters and leaving Ethan. The few times I did go home I felt guilty for not being in the hospital. I wouldn’t wish it on anyone; however, the nurses did an amazing job caring for him.”

GETTING THE TRANSPLANT CALL

After months of waiting, Roselelia received the call in summer 2020 that Ethan would receive a transplant.

“Waiting for the call for a transplant was very hard,” she says. “We didn’t know if it would take place during the pandemic. Just before we started hearing about COVID-19 in the news, Ethan had been getting more tired. His oxygen levels were dropping, he needed blood transfusions and he was very poorly. He had an infection and was having more issues daily with his Berlin heart [a mechanical device used to support children in severe heart failure, either until recovery or until a heart transplant is possible] and clots.”

Roselelia remembers how, one day in July last year, Ethan had a day where his head kept tilting. He was referred for a CT scan, which revealed he’d had mini strokes some months before. “We were told they didn’t know how these would impact him until he is at least two years old, as that’s when the brain is at its full development for his age,” she adds. “The areas affected in his brain could impact his memory, learning, behavioural and cause epilepsy, but we won’t know until we get to that stage and he is reviewed again. He is, however, showing no signs at the moment and developing well.

“Then the day we got the call to say a heart had been found I wept with relief. When he had the surgery, I held him in my arms and sang to him as he was given the anaesthetic and wheeled to theatre for six hours.”

The surgery was a success and Ethan was able to go home in time for Christmas in 2020.

BEING BACK HOME FOR CHRISTMAS

“Having Ethan home was an amazing end to a difficult year,” Roselelia says. “I was looking forward to seeing him tuck into his first Christmas dinner with us all. Christmas has always been a huge celebration in our household as it’s also my mum’s birthday. And Christmas [2020] was perfect although, like everyone, we were in lockdown and unable to see family and friends. When the tree went up, I knew I’d have a battle on my hands with him trying to climb it but then I remembered this was the first time Ethan had seen a Christmas tree and really experienced Christmas Day.

“On Christmas Day morning we all opened our presents together. Ethan had no idea what was happening, he was just so excited listening to his sisters squealing away, but at just 18 months old you don’t really know what is going on anyway. He was more excited about the wrapping paper than his presents! This year’s Christmas will be different as he will understand that little bit more about what’s going on.”

ETHAN NOW

“Ethan has now been home for 15 months, the longest he has ever lived at home,” Roselelia explains. “He has definitely settled into his surroundings and family life. We celebrated his second birthday at home and he started nursery

in September, which isn’t something we even thought we could be discussing.

“He loves watching Mr Tumble and Mickey Mouse Club House – you get no response if they are on!

“He is learning to say a few words now and is really determined. We love his spirit – nothing holds him back. He loves playing with his sisters and with dinosaurs – shouting “roar” at them when he plays. His favourite food is Weetabix, he is practically shouting at you to get it in his mouth as we get the box out the cupboard.

“Healthwise, Ethan is doing well, we’re very lucky he’s continuing to stay healthy. What GOSH did for us was amazing, we’re so thankful for everything and squeeze Ethan that little bit harder everyday – knowing the family of the organ donor would love to still be able to do the same.”

Ethan’s dad Richard adds: “We’re so grateful to the two families who said yes to organ donations and that Ethan’s recovery is going well. It’s lovely to be a proper family again under one roof and so nice to wake up each morning and hear Ethan chatting away to himself and watching him play with his sisters.” “This Christmas we’re most looking forward to being home,” Roselelia adds. “We were in GOSH for more than a year and Ethan’s normal was to be surrounded by nurses in masks with mummy and daddy coming into to see him every day. Now, being together at home as a family is just amazing!”

CHARITY SUPPORT

“Richard and I stayed in the family accommodation close to the hospital,” Roselelia adds. “I don’t think anyone can understand just how much of a help that was for us to stay a short 10-minute walk away from our son, as we live over an hour’s drive away from GOSH. We have had many late-night calls to get to the hospital quickly due to something happening with Ethan, and the stress of only having to get there in 10 minutes definitely alleviated our fears at the time. GOSH Charity funding the family accommodation near the hospital is amazing.”

You can make a donation to the GOSH Charity Christmas Appeal by visiting gosh.org/xmas or by calling 0330 002 1514.