The heart of the family.

Our daughter, Alanya, was just three years old when she was diagnosed with an Atrial Septal Defect (ASD) - a hole between two of the chambers of the heart. The condition means that blood leaks through the hole and the heart has to work harder to pump blood around the body. She had a very poor appetite from birth and always struggled to put weight on but we attributed this to her being premature as she was only 2lbs 13oz. Her cardiologist had hoped the hole would close on its own but at the cardiology review appointment in February 2011, we were told the hole had got bigger and her heart was already enlarged due to the extra work it was doing to pump blood around the body. It was here that we were told she would need open heart surgery to repair it. Although she was relatively symptom free, it was important to have the surgery while she was young to prevent long term damage to the heart and lungs later in life. However,as her case wasn’t regarded as an emergency we had to wait nearly a year for our date. From September 2011, we had two last minute cancellations due to Alanya being ill and an emergency case taking priority. After a fantastic Christmas break, Alanya returned to school on the 3rd January 2012. Little did we know that that day would be the day. At 10am the hospital called us and told us to pack our bags and come straight in as they had had a cancellation due to an illness and we had to be there at 2pm for Alanya to have surgery the next day. It was a rush but the only positive thing was it meant we had less time to sit and worry and although Andy, Alanya's dad, was working away we decided to go ahead as we knew he would be back the following day before she went to theatre. The night before the operation the hospital allowed me to stay with Alanya on the ward, but after this, due to lack of space, we had to find our own accommodation. This was when we found out about The Sick Children’s Trust and Eckersley House. We were told about the charity by other parents we met on the ward who were staying there. They gave fantastic reports about the staff and facilities. We had accommodation in the old annex for a few days but it was deserted and I didn't feel safe staying there alone when Andy wasn’t about so we asked the charity if they had room for us there and were delighted when they said they did. Alanya was in theatre for six long hours and returned to the Intensive Care Unit (ICU) ventilated and unconscious. Nothing can prepare you for seeing your child so poorly and as a parent you feel so helpless. Her surgeon told us that the hole was not as straightforward as first thought and Alanya had complete heart block following surgery. The electrical part of her heart was damaged as a result of the surgery. She had a temporary pacemaker which controlled her heart rate and rhythm. She was on ICU for a day then moved to the High Dependancy Unit (HDU) where she remained for the rest of her stay due to needing a temporary pacemaker and having her heart monitored. Her surgeon hoped her heart would return to normal rate and rhythm on its own but after seven days she was still in heart block. The team decided she needed further surgery for a pacemaker. Seven days after her initial surgery, we had to take her to theatre again. It broke my heart having to explain to her that she needed another operation, but she amazingly just took it all in her stride. This was a three hour operation. We thought, "Three hours? That's nothing in comparison to last week!" We knew the pacemaker surgery was needed in order to get home so we had a strange sense of relief as she went to theatre. It was one step nearer to going home. During the surgery, Eckersley House provided us with some respite. We managed to go over to the house and make some lunch and take a break from the clinical surroundings of the hospital. It provided a welcome distraction to do something ‘normal.’ Having the room at the house allowed us to stay just moments away from Alanya. If they wanted us at any time, either because Alanya was unwell or unsettled, we could be on the ward in five minutes. It provided us with a bit of breathing space to eat, drink, sleep, have a bath, as well as do the laundry and watch 10 minutes of television in a rare moment of down time. It really was our ‘Home from Home’. It helped to talk to other parents who were staying there for a bit of moral support. It can be a very lonely and stressful situation to be in and talking to others who were in the same situation helped us all. Families were often just calling back at Eckersley house in the late evening to get something to eat before heading back to their child on the ward. The Leeds General Infirmary also had their winter visiting policy in operation while Alanya was being treated. This meant that only parents could visit the ward to minimise the risk of infection. Eckersley House allowed family and friends to visit to offer support and have a drink without needing to sit in a busy hospital reception or dining room. After her second lot of surgery Alanya stayed on HDU that night. The next morning she came bounding down the ward to tell me the doctors had said she could go home the next day. Friday 13th! Lucky for us! Once home, we had fantastic support from family, friends and school. We are sure Alanya's speedy recovery was helped by her lovely school friends who were ecstatic to see her back at school even though she did a "show and tell" about her hospital stay including showing them her scar! We are happy to say that Alanya is really well now. She had seven weeks off school initially but is now back to full health. We have to go for pacemaker checks every few months and there are a few things she cannot do because of the pacemaker such as karate and contact sports. She doesn't let this worry her as she is a very 'pink’ girly girl. She does still need the pacemaker when her heart rate drops and it is reassuring to know it is there doing its job. She has gained weight and her appetite is huge. She has so much more energy and we struggle to keep up with her! I was a very proud mummy when she came first in the 100m sprint at sports day just five months after her open heart surgery, much to everyone's amazement. She will need further surgery in the future, either to replace the pacemaker or remove it if she no longer needs it and it is wonderful to know we can call on The Sick Childrens Trust’s Eckersley House again when the time comes. Vicky and Andy Rejterada, Alanya’s parents

Unless it happens to you...

Unless it happens to you, or someone close to you, you may not realise how vital a service a charity such as The Sick Children’s Trust provides. We are fortunate in the UK to have free health care at the point of need, but there are so many financial and practical implications when your child becomes sick that go beyond medicine and medical treatment. Our daughter, Gracie, was born in 2011 with cerebral palsy, and this has led to her needing a lot of intensive input from doctors and therapists in her young life, including several hospital stays. We are a little unusual as a family because Gracie’s dad, John, also has cerebral palsy; although this is a coincidence as the condition cannot be inherited. We had been staying in Filey, North Yorkshire, on our first family holiday since Gracie had been born, and a day or two before arriving, Gracie had been pronounced fit to travel. However, on holiday she developed breathing problems and she was taken to Leeds General Infirmary (LGI). We had the worry of Gracie being taken suddenly ill and needing wheelchair accessible accommodation (for John) in a city where we knew no-one. We live 200 miles away from Leeds in Ayrshire, Scotland. As it transpired, Gracie was more ill than we realised at first and she needed to be in the LGI for three weeks, some of the time in intensive care. The hospital itself could provide a room for one day’s stay, but although we were grateful to be able to finally get a sleep after being awake all night whilst Gracie was being stabilised by the medical staff, John had the added problem of the shower being inaccessible, so he was not able to do a basic thing like wash! We were considering checking into a hotel, an expense we could not afford, which we would have had to pay for with our credit card. Then a nurse mentioned Eckersley House. It made such a difference to us to be given a room there. They could not only provide us with a bed, but a home from home. It was such a relief to be able to stay minutes away from our daughter’s cot and to be able to concentrate on her, knowing that we had all our practical needs met. Staying at Eckersley House was better than staying in a hotel because we could cook for ourselves and wash ours and Gracie’s clothes. The house had wheelchair access to the rooms, there was a bathroom John could use and even the kitchen had been adapted. Disabled people are still often not considered when facilities and services for parents are planned, so it was so reassuring and affirming to us as a family to find that our needs had been catered for. John was able to be a father and be there for his daughter, as he wished, and he was also able to support me. Also, we were staying next to families in similar situations to ourselves and there were opportunities for us to talk about our children which really helped us get through this emotionally difficult time. It is hard enough to have a child who is ill and be a good parent and help to get them through their illness. You simply do not need the extra burden of debt at a time like this. It is vital that you are able to stay together as a family, with as few hassles as possible, so you can support each other through your child’s illness. Eckersley House just made such an immeasurable difference to us. Sarah Dever, Gracie’s mum Pic ref: Dever family.jpg Pic caption: (L-R) Gracie, John, Fionnna, Sarah Dever.