“We were determined to stay together”

At the height of the Coronavirus pandemic, our hospital increased its intensive care capacity and treated more of the sickest children from across the Midlands, in support of other NHS Trusts in the region caring for COVID-19 patients. This meant worried parents travelling further from their homes in order to be with their children.

But rather than face arduous journeys to and from our hospital, Birmingham Children’s Hospital used funds secured from NHS Charities Together, as well as generous contributions from the Eveson Charitable Trust and the Hobson Charity, to provide overnight accommodation in the nearby Stay City Apartments and Holiday Inn. One of the families to benefit from this generosity was the Isherwoods.

Becoming a parent is supposed to be the happiest time in your life, but for Andrew and Mia Isherwood those joyous first few weeks soon turned in to utter anguish. Their whole world was turned upside down and life in Nottingham uprooted, after their baby daughter Elena was discovered to have a life-threatening heart condition, and she was blue-lighted over 50 miles away to Birmingham Children’s Hospital.

Elena was just seven weeks old when her parents first noticed she wasn’t feeding properly. They were advised by their health visitor and GP to monitor her, but as the days and weeks went by, Elena continued to struggle. Eventually, they were advised to take her to A&E to have her checked over. However, little did Andrew and Mia know, that trip to A&E would be the start of weeks of heart-break and uncertainty.

When Elena was seen by the doctors, they noticed that she was shaking her head unusually. Suspecting she may have a heart murmur, an ECG was ordered which discovered she had an enlarged heart. Elena was diagnosed with cardiomyopathy, a disease of the heart muscle that makes it harder for the heart to pump blood to the rest of the body. It was a completely unexpected blow for her parents. But to make matters worse, Elena’s condition quickly deteriorated.

Her breathing became laboured and a decision was made for Elena to be sedated and go on a respirator, to try and stabilise her, but she continued to worsen. Andrew comments: “At one point, there were nine to ten people around her, trying to stabilise her. My wife and I had to step out of the room, not knowing if she’d make it. We were absolutely distraught – 12 hours ago we brought her in, as a precaution, for what we thought was a possible food allergy or digestive issue, and now we could lose her!”

Luckily, the team was able to stabilise Elena, but as an added complication, she would need to be transferred to Birmingham Children’s Hospital. Elena was rushed to the Paediatric Intensive Care Unit (PICU) at the hospital, where she continued to receive urgent care. Andrew and Mia followed shortly after the ambulance, with just a few belongings, and not knowing when they’d next be home. Luckily, the hospital was able to cover the cost of accommodation for the couple, thanks to emergency funds secured by Birmingham Children’s Hospital Charity and specially earmarked to support the families of patients who have been transferred from further afield.

In Andrew and Mia’s case, for the first 12 days, they were put up in the Holiday Inn just around the corner from the hospital. In these early stages, whilst Elena was so unwell, it was important for her parents to be close at hand. And this turned out to be the right decision, as on more than one occasion the couple received an emergency call to say Elena has taken a turn for the worse and they should immediately come back in. Andrew says, “We were just on tenterhooks any time we were away from Elena, not knowing when we might get a call. It was at least some comfort to know we were staying close by and could be back at the hospital in five minutes, if we needed to.”

Doctors continued to provide around-the-clock care to Elena and over the days they saw little, positive improvements. Knowing that the family could be staying in Birmingham for a number of weeks, the couple were moved to the Stay City Apartments in Birmingham City Centre after Elena’s conditioned stabilised. This provided them with a more comfortable home-like setting, where they could try and have some normality, like cooking themselves a meal, or washing their clothes.

As the next phase of Elena’s care was home visits, where she spends a day at home with her parents, before returning to hospital, having this type of accommodation near to the hospital was all the more important. After six weeks, the trio spent their first night back together as a family at the Stay City Apartments.

Andrew said: “It felt so good to have Elena with us, but really scary too. It’s been such a whirlwind experience, and Elena has had so many up and downs. It still feels like there are so many unknowns with her condition, and she’ll have to be monitored closely over the next few months and years to see how her condition progresses. It will no doubt take us some time until we feel comfortable and relaxed with her away from the doctors, so in the short-term it was great to be close to the hospital.”

One thing the family does know is how much of a difference having somewhere to stay has made to their experience. Andrew comments: “We were determined to stay together. That was the most important thing for us, so that we could support one another and having accommodation provided has allowed that. Knowing we would have somewhere to stay was like a huge weight had been lifted from us. It took the added stress and financial burden away from us, so that we could just concentrate on Elena getting better. For that, we’ll always be grateful.”