We could be close to Sophia every single day

Will and Vicky stayed with us at Stevenson House after Sophia was born at 24 weeks weighing just 1lb 10oz

Sophia Anne Simpson was born on Sunday 5th August at 1:48pm and weighed just 1lb 10 ounces. Being born 106 days before your due date presents a fair few challenges, to say the least, and already we have experienced quite a few bumps in what will be a long journey.

Although unexpectedly born at Southend University Hospital, it was essential Sophia was immediately transferred to the Royal London Children’s Hospital for lifesaving treatment in the hope she would receive the care she desperately needed to survive. Initially, I had to stay in our local hospital after delivery, but forced my husband, Will, to leave me and travel with our baby in the ambulance. Even in my state of total shock I remember saying to him, ‘If she doesn’t make the journey I can’t let her die on her own. You have to be there’.

Baby Sophia was cared for by the amazing staff on the neonatal intensive care unit (NICU) at the Royal London Children’s Hospital for the first eight weeks of her life. Having been discharged just hours after giving birth I raced to be with my family. Will and I spent an uncomfortable night sleeping in the hospital, but the next morning we learnt about The Sick Children’s Trust, a national charity that provides free ‘Home from Home’ accommodation for families with seriously ill babies and children in hospital. Deborah, House Manager at Stevenson House, one of three houses run by the charity in London, came to meet us on the ward. She had been briefed on our situation by the medical team, including the fact we lived so far away, and offered us a room. We accepted straight away and moved in.

Having the opportunity to stay at Stevenson House whilst Sophia was in hospital in London meant that we could be close to her every single day. We could be by her side almost immediately if the doctors or nurses contacted us to let us know something had changed. Even when she was in the incubator we were involved, providing kangaroo, or skin-to-skin, care, which helped Sophia survive and enabled us to bond with our baby, forming those essential attachments as a new family.

Initially I really struggled to provide breast milk and so contact with Sophia not only helped me to produce more, but it minimized my stress levels. I was able to express in comfort in our room at Stevenson House and store my milk in a special fridge. If we had to travel the 90 minutes to and from our home in Chelmsford every single day all of this would have been so much harder. Plus, once Will went back to work, because it was only a tube ride away, he could visit Sophia in NICU on his way to the station and then meet us back in the hospital as soon as he was finished for the day.

Being able to see Sophia first thing in the morning, throughout the day, and last thing at night made a very difficult time much easier. There were life-threatening health scares from the start. The first major hurdle was getting Sophia to breathe on her own. She had patent ductus arteriosus (PDA), which meant that when she tried to take a breath her lungs would flood with blood due to a defective valve and this put too much strain on her tiny heart.

During her early weeks she was also diagnosed with acute renal failure, pneumonia and chronic lung disease. Sophia also suffered a grade 2 bleed on her brain, which was terrifying and, whilst this now appears to have resolved, her development will still need to be closely monitored over the coming years.

Both Will and I made friends with other families staying in Stevenson House. Listening to their stories, especially those parents who had older premature babies, was helpful and a comfort to us both. I remember talking to the Dad of a little girl who had been born at a similar gestation to Sophia. They were back in London for a procedure, two years on, and it was amazing to see his daughter running around the playroom with her sisters having a lovely time. It filled me with hope and encouragement for the future.

Sophia did so well that it wasn’t long before we were told she was being transferred to Broomfield Hospital, only a 15 minute drive from our home. We were understandably anxious to leave the amazing doctors and nurses at The Royal London Children’s Hospital and give up our room at Stevenson House, but knew we would be one step closer to getting our baby home. However, it wasn’t an easy transition and Sophia’s breathing deteriorated badly on arrival in Chelmsford. During her time there Sophia also had to battle with severe reflux, which caused terrifying episodes where she struggled to breath. Watching your baby effectively have to be resuscitated is every parent’s worst nightmare.

Miraculously, after two months of exceptional care in Chelmsford and just fifteen days after her due date, Sophia was discharged and we took her home for the very first time. We hadn’t dreamt that we might be back home in time for Christmas because of struggles with both her lungs and feeding, yet here we were! Sophia loves lights and was mesmerised by the sparkling Christmas tree. Although our immediate family were able to spend time with us in Stevenson House and visit Sophia in NICU there are still lots of nieces and nephews who didn’t and they were very excited to meet her.

Sophia is doing really well. Although she is still very small she has put on a good amount of weight. We recently celebrated a huge milestone when she turned six months old. Also, along with my parents we have already raised over £3,500 for The Sick Children’s Trust and know that this will go a long way towards ensuring families in the future can stay just moments from their poorly children.

Vicky Simpson, Sophia’s mum

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