Finn and his twin brother Sam were born at 36 weeks, a healthy 6lbs and 4lbs 14ozs, and went home with mum Sarah and dad Jonathan just 24 hours after their births. But when he was only 11 days old, Finn became poorly and was transferred to the Alex for treatment.
Here in her own words, Finn’s mum Sarah has shared his story with us...
“Both Finn and Sam were perfectly healthy and we were starting to settle into life as first-time parents to twins, when Finn started to refuse his feeds and became extremely lethargic. We were admitted to East Surrey Hospital, our local hospital in Redhill, for tests and given three possible diagnoses for Finn’s sudden illness. After liaising with the surgical team at Brighton throughout the night, Finn was transferred to Brighton by emergency ambulance. It was at that point, when we left Sam and Jonathan in the hospital room and the ambulance sirens were switched on as we raced through rush-hour traffic that the seriousness of Finn’s condition really hit home.
On arriving at the Alex we couldn’t have hoped for better treatment – a team of doctors was waiting for us in A&E and we were taken for x-rays and admitted into the HDU within minutes. Finn was diagnosed with necrotising enterocolitis (NEC), a potentially life-threatening inflammation of the bowel. Further tests showed that Finn was also suffering from a perforated bowel and an operation would be necessary. Signing the consent forms for Finn’s surgery and giving him a cuddle as he went into theatre were two of the scariest moments we have ever experienced. But every single member of the team was fantastic, reassuring us at each step. Before Finn went into theatre I remember saying to his surgeon ‘I know I don’t need to say this, but please look after him’ – and I really knew I didn’t have to say it, because they would be doing absolutely everything they could for our little man.
After several hours of surgery, where his large bowel was removed, Finn was placed onto a ventilator and taken to the Trevor Mann Baby Unit. I have nothing but admiration for the doctors and nurses who do such an amazing job of caring for newborn, often tiny, extremely-poorly babies – while also looking after frightened, overwhelmed and worried new parents. Finn’s nurses Adriana, Eleanor and Judith not only gave Finn their around the clock, one-to-one care but also made sure I was looked after. Being miles away from home, they arranged for me to stay at Ronald McDonald House, another fantastic charity which deserves nothing but thanks and support so that it can continue to provide a home from home for parents with sick children at the Alex.
Finn was making an amazing recovery and doing well at home, when just a month later he became ill again. After several days nil-by-mouth, with x-rays, scans, tests and blood transfusions it was found that unfortunately the NEC had returned, with the further complication that his bowel had narrowed, meaning that a second major operation was needed. With a longer stay in hospital we really saw at first hand the ‘non-medical’ work that is funded by Rockinghorse and what it means to patients and their carers. Finn was lucky enough to have several reiki treatments during his stay and was also visited by the amazing musicians. The one time we cried in hospital was as the ladies sang ‘row, row, row your boat’ to our poorly baby who had lost so much weight during his illness and was now smaller than his ‘little’ brother. Proof - if needed - that music can be so wonderfully healing.
Finn is now six months old, a happy (and chubby!) baby who loves nothing more than being sung to and playing with his brother. There is always the risk that Finn could become ill during his lifetime following two such major abdominal surgeries, but he will continue to be monitored by the surgical team at the Alex and although we can’t help but be anxious, we know he is in the very best hands.
Words are truly not enough to express how incredibly grateful we are to every single one of the people we met at the Alex and the Trevor Mann Baby Unit, as well as Ronald McDonald House and the paramedics who transferred us to Brighton several times in the first few weeks of Finn’s life.
Nothing can prepare you for being a parent to a seriously-ill baby, you have to take each and every minute as it comes. But that task would be impossible without the dedication, compassion, kindness and amazing skill that all of these people demonstrate every day while ‘simply’ doing their jobs, and of course the people who donate to charities like Rockinghorse to enable vital medical treatment and complementary therapies to be funded.”
If you would like to share your own story with us, we would love to hear from you. Call us on 01273 330044 or email firstname.lastname@example.org.