At our 16 week scan it was confirmed that our baby had a heart defect

When my wife, Kiera, fell pregnant with our third child we were both delighted. We have two boys already, Jacob who is four years old and Theo who is three years old. We couldn’t wait to have another baby to give them a little brother or sister and it never even crossed our minds at the beginning that anything could go wrong.  

However, our 12 week scan highlighted some issues which indicated our baby could possibly have Downs Syndrome or a heart defect.  We were really worried and when we were told that there was a 1 in 3 chance our baby had Downs Syndrome we decided to have the CVS test which fortunately came back clear.

We were thrilled to find out a couple of weeks later that we were having another little boy but at our 16 week scan the consultant confirmed that our baby did in fact have a heart defect. It was so upsetting to hear this but the doctors were great and helped to reassure us that everything was in control; it was more than likely that he would be fine and would just need to be checked over by a paediatrician when he was born.

On the 12 March, Alexander was born three weeks prematurely at Colchester Hospital. Kiera was induced and I unfortunately missed the birth. After rushing to get to the hospital and running down the ward halls I was delighted to see that Kiera was well and meet our new born son. As nurses ran the usual tests on Alexander we were anxious, knowing that he would need to have more tests than usual, however, the urgency of the doctors around us indicated that his condition was far more serious than we first thought. Within an hour of being born it was confirmed that Alexander had an imperforated anus and would need to be transferred to another hospital for specialist treatment.

He was rushed to The Royal London Hospital in East London just hours later by the Acute Neonatal Transfer ambulance and Kiera and I followed up in the car. It was really daunting as we’re from Clacton and don’t know London at all; we didn’t know where we were going or even where we could park the car when we arrived. All we wanted was to be by Alexander’s side and the journey seemed to take a lifetime.

On arriving at the hospital we parked at the nearby shopping centre and went in to meet consultants. We were devastated to learn the extent of Alexander’s condition: we knew that he would be in hospital for the next few days and started to panic. We didn’t have to worry about Jacob and Theo luckily as they were staying with their grandparents but Kiera and I were exhausted and over 70 miles from home. We couldn’t bear to be away from Alexander in such a critical condition but we couldn’t stay on the intensive care ward either so I began to look into local hotels on my phone.

I was about to book the local travel lodge which was going to cost about £60 a night when a nurse on Alexander’s ward came over to me and said that there was free local accommodation close by that we could stay in. She took Kiera and I over to The Sick Children’s Trust’s Stevenson House, which was just a five minute walk from the hospital. A lovely lady called Irma opened the door and welcomed us in. She showed us round the house, which was amazing, and let us know that we could stay free of charge while Alexander was in intensive care.

The first two days at the Royal London were honestly like a whirlwind. We were at a complete loss of what to do and spent every waking minute by Alexander’s bedside. We didn’t eat, shower or stop for a second and it wasn’t until Irma sat us both down that we realised we weren’t doing ourselves any good. She reiterated that while we were at the house we were only ever a five minute walk away and if there was ever an emergency then the nurses could call through directly to our room. It sounds so simple now but between the exhaustion and worry, Kiera and I were in such a daze, it really took someone from the outside to point out that we needed to look after ourselves in order to stay strong for our little boy. On Irma’s advice we popped to the local supermarket and stocked up our cupboard in the kitchen, we made ourselves a home-made meal, had a hot shower and got some rest.

At two days old Alexander had a temporary colostomy bag fitted and it was when he was being prepared for this surgery that he was also diagnosed with Atrial Septal Defect, a hole in his heart. We were informed that he would need surgery to treat the condition and it continues to be a bit of a waiting game as all of Alexander’s treatments seem to rely on the other; his heart defect needs to be stabilised before he can be scheduled in for his other surgery.

Alexander was in The Royal London for a week when he was born and we honestly don’t know how we would have coped without having Stevenson House. It is such a fantastic facility and helped us through the most difficult time. We were fortunate that Jacob and Theo could stay with their grandparents but it was lovely to know that if we had been there any longer, they could have come to stay with us. We really missed them but having an internet connection in the house meant we could face time them every day which was great.

Not only was it comforting to stay close by to Alexander but it also helped Kiera and I to learn about the essential day to day care he needs; we learnt so much from his nurses which made us feel much more confident about taking him home. We are pleased to say that our little boy is now home with his brothers and it is lovely to see our family grow and watch them together. We have community nurses that pop in and out to check on him and we are constantly going back and forth to The Royal London for appointments but he is definitely on the road to recovery which is the most important thing.

We are still awaiting a date for Alexander’s upcoming surgery and it is reassuring to know that Stevenson House will be there for us when we need it. We have kept in touch with the house staff and regularly pop in when we are at appointments with bits for the house and donations as we understand now how important it is to the families staying. We also have collection boxes in my mum and dad’s post office in St Osyth to collect as much as we can for the charity.

It is unbelievable to think that we had never heard of The Sick Children’s Trust before, especially knowing how much we have come to rely on the charity now. It really is an amazing facility and it is wonderful to have somewhere to stay where you can chat with other families who are all going through similar experiences.

Mark Pickering, Alexander’s dad