Hasnath was three years old when he became unwell. He’d had a cough, lost his appetite, was constipated and vomiting. At first we were told it was a viral infection, but over the next day his symptoms seemed to get worse. We were assured at our local hospital it would pass, however that weekend Hasnath was groaning and complaining about pains in his tummy, his legs were swollen and he also hadn’t passed urine for 24 hours. We took him back to the hospital where they told us they believed he had a problem with his kidneys.
But that wasn’t all. More devastating news followed when Hasnath’s face became swollen and he grunted with every breath he took. We were sat down and told the earth shattering news that he had an enlarged heart and liver, and within hours he was rushed to Newcastle’s Freeman Hospital. That night, it was confirmed that our son had heart failure. My husband burst into tears, while I just stared back at the doctors, stunned.
We tried to take everything in but it was too much. Hasnath had gone from being a lively toddler, laughing and smiling, to a little boy with heart failure. We kissed him goodnight on the paediatric intensive care unit (PICU), and while we were preparing for a night sleeping in a hospital chair a nurse approached us and said there was a room at Scott House for us. She explained that Scott House was free ‘Home from Home’ accommodation run by a charity called The Sick Children’s Trust, just a few minutes’ walk away. I was in so much shock that I hadn't given much thought to where we would stay long-term. But, that burden was taken away from us at the most difficult and traumatic time of our lives.
The Scott House team were first class – they were always welcoming, friendly and approachable. Nothing was ever too much trouble. I was even given a travel cot for Yusuf, Hasnath’s younger brother, so he could stay with me. Our family was kept together when it mattered the most and that wouldn't have been possible without The Sick Children's Trust.
The first week I was in a daze, I felt like I was in a bad dream. Our worst fears were confirmed as we were told that Hasnath was actually at the end stage of heart failure. He was put on the heart transplant list immediately and the only thing that kept him alive was a mechanical heart support called HeartWare. Without this we would’ve lost him. At three years old, he was one of the youngest patients in the world to have this left ventricular assist device fitted, which would take over the work of his heart.
He was in theatre for ten hours and we just prayed that he would be strong enough to pull through. And he did. When I saw him – I couldn’t even cry. I was so numb when I looked at him covered in wires and tubes. I just remembered thinking he's alive and that's all that mattered. My husband tried to comfort me but I was speechless. Nothing prepares you for this, to see your child critically ill and knowing there is absolutely nothing you can do to make it better. Seeing him like this was so painful, but as I held his hand he moved it onto his chest. A moment I will never forget and will cherish forever because that to me was a sign that he was going to be fine.
In the beginning, I really struggled to eat and sleep for worry of my son, but the nurses would persuade me to go back to Scott House and have a little rest. And although I didn't like the idea of leaving him, once I got back to Scott House and had a shower I felt much better. What helped was that in our room there was a direct telephone line to Hasnath’s ward so I had the peace of mind that if there was a problem they could contact me, or I could contact them.
Hasnath stayed in PICU for another week before being moved to the high dependency unit (HDU). Over the next few months, he gradually started to gain his strength and started to talk, eat and then finally walk. It was amazing to see my son who we’d nearly lost, doing all these things again. His scans also revealed his heart had shown signs of improvement so he was taken off the urgent transplant list. Hearing this felt like the best news ever so I coped much better knowing that he might make a full recovery. Plans were being made to discharge him with the HeartWare. However our hopes were crushed when doctors told us Hasnath needed to go back on the transplant list because his heart hadn't improved enough.
It was hard for me to accept that our son was going to have another major operation and think about all the risks involved. But I knew that whatever happened was out of our control and we had to enjoy our time with Hasnath. We made sure we had trips outside the ward, starting with Scott House. Hasnath loved these visits, he was so excited to see where mummy and everyone stayed when we weren't with him – it was like he was a different boy.
At Scott House, there was a children's play area and a living room with a huge TV which Hasnath really enjoyed. When we were at the house Hasnath would jump up at the dining table, demanding food and water – something quite unusual as he didn't like to eat or drink on the ward. His brothers would also come to Scott House to visit and we could all sit down together for family meals which meant so much to us.
Although Hasnsath was on the urgent heart transplant list, we were told we could take him home on HeartWare again. We were trained how to use it, did a few trips out to the park and even the supermarket to make sure we were ok. But as we prepared to pack our things and leave, we got the call. The call we’d been waiting for. A heart was available for our son.
Everything happened so quickly. We’d been waiting so long for a life-saving donor heart that when the medical team started to talk about being able to take him home and wait there, that became our main focus. All of a sudden I had to be prepared for Hasnath to undergo major surgery that very same day that we had planned to take him back home. And I was scared. Because Hasnath had already gone major open heart surgery, he was at risk. And he was at risk because he needed to have the HeartWare taken out which was what had been keeping him alive. It’s so hard to prepare yourself for all the possibilities in a matter of hours.
At 2am we handed our beautiful boy over to his medical team and as we walked away we prayed for Hasnath and everyone involved. Throughout the night we made calls to friends and family to let them know that his operation was taking place. After that all we could do was wait and hope that Hasnath would be strong enough to pull through such a major and life-changing operation. We prayed for Hasnath and also thought about how this day wasn’t just a significant day for us. Another family out there were grieving the loss of their loved one, and while we desperately waited for the good news that all was well, we remembered just what they had done for us.
That night I managed to get two hours sleep back at Scott House and when I woke up I was dreaded meeting with Hasnath’s surgeon, Mr Hasan. But Mr Hasan told us he was really pleased with the operation and that it had gone really well. I couldn’t believe how fortunate we were. As soon as we had finished talking to Mr Hasan, we went to see Hasnath. We were overcome with emotion. Hasnath actually looked quite well considering what he had been through, but me and his father did have a little cry as seeing him again covered in tubes and wires was still very hard to take in.
That weekend we celebrated Hasnath’s new heart and the end of Ramadan, of which The Sick Children’s Trust helped us celebrate Eid with a party. Friends had sent in food because I was too busy to even think about anything but Hasnath. It was lovely of Scott House Manager Andrew and his team to remember this event and celebrate this special day for Muslims. It really made us feel cared for.
Hasnath went back to the HDU from PICU after five days. By day 11 he was getting out of his bed and wandering off to the playroom himself! We couldn't stop him. He was so active and so independent.
Three weeks after Hasnath had his transplant, his consultant Dr Richard Kirk, was happy for him to be discharged – but this had to be done in phases over the following weeks. So we made little trips back to Darlington which was lovely as Hasnath rediscovered his old toys and was so pleased! Finally, six weeks after his transplant we were given the news that we could take him home properly. Six weeks after he’d received his gift of life.
Every day we think about Hasnath’s donor and the family that made such a selfless and courageous decision to help another person in a time that must've been incredibly devastating for them. We hope that they have some comfort knowing they saved a life and kept a family together.
Hasnath is now doing so well. If you met him, you’d be amazed knowing his story and seeing how he’s bounced back. We will never be able to thank the fantastic team at Freeman Hospital and The Sick Children’s Trust enough for what they have done for our family. Being a parent and thinking you could lose your child is an experience that no one can prepare for, and you need all the support possible. So now, I volunteer for The Sick Children’s Trust and Children’s Heart Unit Fund (CHUF) to say thank you and help them continue the vital work they do.
Afia Begum, Hasnath’s mum