Our daughter Alya loves to dance. Every Saturday night, she is there dressed up in front of the television ready to dance her socks off to Strictly Come Dancing. It never fails to make me smile and fills me with so much love.
Alya turns seven years old in February and in this short time has had three major heart surgeries due to a heart defect called Truncus arteriosus, which meant her heart didn’t work properly and made it difficult for her to breathe. She now has a mechanical heart valve which helps improve her heart function. As she’s still quite little you can hear it tick, like the sound the crocodile in Peter Pan makes.
We knew before Alya was born that she would need heart surgery, so we were prepared but as new parents we had no clue really what to expect. We didn’t know what it would be like being in hospital for over five weeks and our baby having a major operation. Everything was quite traumatic and we were living day to day which is why Eckersley House, run by The Sick Children’s Trust, remains such an important part of our lives as it was there for us, offering what we needed.
At this time there was just one bed on the ward where either Adam or I could sleep. However after Ayla’s surgery at just a few weeks old she was on intensive care where neither of us could stay. This is when we were told about Eckersley House by the nurses and we were given a place to stay. I had a difficult time when Alya was born and wasn’t very mobile so to have a place to go where I could get a bit of rest and there was some quiet was really needed. Not only that but we could wash our clothes and also eat a proper meal which wasn’t straight from the microwave!
Her first surgery was a success but due to her being a baby, we knew there would be further surgeries down the line. We managed to get home for five months before Alya became ill with a chest infection and we ended up back in hospital for a month. We were supported in a room funded by the Children’s Heart Surgery Fund at this point which was a great help. The next time we came across Eckersley House was ten days later when Alya had her second heart surgery to transplant a donor heart valve. This time was really traumatic as she was in intensive care for over a week and over the course of our stay was in and out of surgery three times. We stayed at Eckersley House until she was discharged and every night Adam and I alternated between sleeping next to Alya and sleeping at Eckersley House. The hospital is noisy so after a night in Eckersley House we felt much more rested. Our parents also came to visit and Eckersley House was a space we could see them while getting the washing done and preparing some food. It’s easy in hospital to lose track of what’s going on, whether you’ve eaten and where you’ve put things. By having Eckersley House, you have a base.
Over the next couple of years, Alya did really well. We were in hospital only for short stays to change her feeding tube from an NG to a gastro and for MRIs. By the time she reached four years old though, it was discovered that the donor valve that Alya had received was leaking and needed replacing. Having a four year old in hospital brought a lot more challenges than having a baby in hospital as Alya had more understanding and was aware of what was going on. She also has a visual impairment so it’s important that any nurse or doctor tells her exactly what is happening before they do a procedure, such as taking her bloods. It was much more distressing for her this time around. We couldn’t really leave her side like we had done previously to go and grab a coffee which is why when we were given a place to stay at Eckersley House on this occasion it made the biggest difference to our own wellbeing.
Again, Adam and I would alternate between being on the ward and being at Eckersley House at nighttime. It was an exhausting ten days so being able to go to Eckersley House to have a shower, sit in a private room and have a cup of tea in bed helped us to restore ourselves and enjoy some down time – even if that was just 20 minutes as it helped us to sort our own thoughts out.
Alya knows about her heart and the special valve she has and deals with everything very well. We talk about any of her worries and answer any questions to reassure her. Alya will need more heart surgery because she will grow out of the valve she currently has, but knowing there is a place to stay that is close to her side so she doesn’t have to go through this alone is a huge comfort.
We recently took part in The Sick Children’s Trust’s online Auction House and won a bid for a virtual dance class with Anton Du Beke. Alya is a huge fan and this surprise is certain to blow her mind. We will organise it for when the time is right. I can’t wait to see her reaction and am so glad we can give her this gift while knowing the money is going to support another family like ours at a time when it is needed the most.
Your child being is hospital is traumatic but can be made easier with help from The Sick Children’s Trust and as a family we want to do whatever we can to help raise awareness of this incredible service.
Clare Waites, Alya’s mum