It is difficult to overstate the incredible impact The Sick Children’s Trust has had on our lives, and remarkable to think that before we needed them, we didn’t even know they existed.
In November 2022, myself and Lee, my husband, went to our local hospital in Durham for what should have been a routine pregnancy growth scan. We were shocked and upset to be told that our baby’s heart was beating way too fast – a condition called Multifocal Atrial Tachycardia (MAT) – and that I needed to be on medication ahead of a planned caesarean section at Newcastle’s Royal Victoria Infirmary (RVI).
Dad Lee cradling baby Alfie. Credit: Caroline Thomas.
Our son Alfie was born via C-section at the RVI on 7 December, six weeks premature and weighing 5lbs 8oz. While we knew he would be immediately taken to the neonatal intensive care unit (NICU) for one-to-one care, it was still devastating to see him whisked away, especially while I was still in the middle of major surgery.
It’s fair to say the first 24 hours were a bit of a blur, and what should have been the happiest day of our lives was suddenly the scariest. There are a few things that will always stay with us from that time: the noises and alarms from Alfie’s monitors, as well as the very distinct, clinical smell of the ward. Lee also felt an overwhelming sense of guilt when he was told to go home and get some sleep as he’d be no good to Alfie or me if he didn’t rest.
Fearing the worst and determined to stay as close as he could, Lee booked into a hotel in Newcastle. He only managed 45 minutes sleep before returning at 4am. It was at this point Leanne, one of the wonderful NICU nurses, said the four words that changed everything for us: ‘What about Crawford House?’, before explaining about the amazing work of The Sick Children’s Trust and their ‘Homes from Home’.
The next morning Lee took the five-minute walk over to Crawford House, where he was met by Andrew, the House Manager. He was kind, understanding and welcoming, showing him our bedroom before saying: “if you need absolutely anything, just let us know”. Being so close to where Alfie and I were inpatients and having a direct phone to the ward gave Lee some peace of mind, and made him felt a little less guilty when getting the rest he needed to look after both of us.
I experienced a similar guilt when I was discharged, finding it painfully hard to leave Alfie on the ward. It goes against all your instincts as a mother and was quite distressing. However, I felt a huge sense of relief when I realise just how close Crawford House was to Alfie’s ward.
Alfie made good progress and was eventually transferred to our local hospital, meaning we had to say goodbye to Crawford House. However, two days before Christmas Alfie’s increasingly unstable heart rate resulted in an emergency ambulance trip to Newcastle’s Freeman Hospital, where he would receive specialist care on their children’s heart ward.
Alfie Thomas. Credit: Caroline Thomas.
With Alfie’s condition worsening and being faced with a new, unfamiliar hospital, it was an overwhelming, scary time for us. We hadn’t even had a chance to think about where we would stay, especially so close to Christmas. Almost unbelievably, The Sick Children’s Trust were again there to save the day, giving us a room at their Scott House ‘Home from Home’, just minutes from Alfie’s ward. Just like at Crawford House, we were made to feel so welcome, with House Manager Linsey delaying her own Christmas break just to make sure we settled in.
Between Crawford and Scott House, we spent a total of 21 days being supported by The Sick Children’s Trust. Nearly a whole month of support, with nothing asked for in return. They kept us together, allowing us to be with Alfie throughout his first Christmas and we’ll be eternally grateful for that.
Of course, we wanted nothing more than to take Alfie home with us. But under the circumstances we could not have asked for anything better than what The Sick Children’s Trust gave us. Their ‘Homes from Home’ are so much more than just a bed. It is a community of parents who all understand what each other is going through, a bond like no other. It is a sanctuary away from the ward where you could cook yourself a meal, find a friendly face and even a shoulder to cry on if you needed it. It allowed us to rest so we could be the best version of ourselves while trying to Alfie.
Thankfully, our story has a very happy ending. Alfie was discharged from The Freeman on 29 December, and I’m so pleased to say that he has gone from strength to strength. After almost a year of receiving various medicines multiple times a day, in November 2023 Alfie was given the green light by his consultant to come off the meds all together, which was the most amazing news for us.
You would never wish for any family to need the services that The Sick Children’s Trust provides, but places like Crawford House and Scott House and their fabulous staff offer the most incredible support at one of the most stressful times imaginable.
We will always be indebted to this charity. We honestly can’t thank them enough for being there for us when we really needed it.
Caroline Thomas, Alfie’s mum
All smiles! Caroline, Alfie and Lee Thomas enjoy a day out in London. Credit: Caroline Thomas.