Miles’ Story

Miles’ Story

Miles was born on 16th October 2024 to mum Rebecca and dad Charlie. His big brother, René, couldn’t wait to meet the family’s new arrival and they were discharged from the hospital, with all seeming to be well. However, that night, things took a turn for the worse which resulted in Miles needing urgent care at Southampton Hospital, including two operations. Charlie has kindly taken the time to share his family’s story.

We had done it – our little family all together, in our little sanctuary. However, that night came the early signs of what was to come – Miles completely stopped feeding. The next day, the Community Midwife paid us a visit at home. She tried every trick in the book to get Miles to feed, but to no avail. So, a trip back to the hospital it was – but little did we know, this would be the last time our new little family would be at home altogether for over a month.

After arriving at the Loveridge Ward, the same tricks were tried with no success. More than 12 hours had passed since Miles’ last feed, and his behaviour was starting to change. We were swiftly moved to Special Care, where Miles was put into an incubator with pipes and wires coming from his belly button, nose and hand. His stomach had started to enlarge and stiffen, veins visible through the skin on his chest. All of a sudden, the fear set in, and the image of our little family at home seemed so far out of reach. What was wrong with our little boy? What had happened, when things had seemed so perfect?

I can’t describe the gut twisting, head throttling, leg weakening feeling you have seeing your newborn isolated in a plastic box, with no idea what is wrong with them. But whatever that feeling is, I can still feel it now – it will never escape me.

That evening, following scans showing a massive build-up of gas in Miles’ stomach, we were told the Air Ambulance was being prepared to collect Miles and take him to Southampton. I overheard one of the nurses saying she would contact Jo at the PPBF (despite Jo being at a community awards ceremony). Some things in life you assume happen to other people – never do you imagine they will happen to you. Never did I think we would need the help or assistance of the PPBF. But thank goodness the PPBF was there to help us when we needed it.

With room for only one parent on the plane, my wife Rebecca and I decided for me to go with Miles, and that she would spend a morning with René to provide him with a sense of normality, then follow. So in the early hours of the 20th October, Miles took his first plane ride. We arrived at Southampton Hospital at 3.30am to a round-table of all the nurses, doctors, surgeons and air ambulance staff. The nurses insisted I get some sleep, ready for a big day, and Rebecca’s arrival.

In that time, the staff performed a bowel wash out, releasing the build-up of gas in Miles’ stomach. And because of this, miraculously Miles was able to feed from Rebecca when she arrived. Miles was stable, but we wouldn’t know what was wrong with him for weeks yet. We were worried for Miles, but also for René who had been left back in Guernsey with his grandparents. Our whole life had been flipped upside down, our family torn apart, stuck in a place we didn’t know.

But there was one thing that lifted our spirits. Overnight, Jo had arranged for Frankie’s Den to be prepared for us. Walking into a place that felt like home was tremendous. Not only that, but we were so close to the hospital that from our apartment window you could actually see Miles’ hospital window! Clean sheets, our own space, a sofa, a kitchen, pictures from Guernsey… somewhere that we could relax, recharge, and mentally and physically ready ourselves for the next day, and the next day, and the next day…

But the real game-changer was the second bedroom which was kitted out for kids – all of a sudden, René could come and be with us, and our family could reunite. I don’t know what our time in Southampton would have looked like had we not had Frankie’s Den. But with Frankie’s Den we could find – amongst all the fear and darkness – moments of peace, moments of sanity, and even moments of joy.

After weeks of waiting for a diagnosis, and hundreds of hours sat in stiff hospital chairs, Miles was finally diagnosed with a rare condition called Hirschsprung’s Disease, where not all of the large intestine has developed as it should, causing blockages. An Ileostomy (an operation to bring the end of the small bowel through an opening in the tummy to form a stoma) was performed to give Miles a stoma, preventing his stomach from bloating, and negating the need for bowel washouts. Shortly after this, we were able to return to Guernsey and spend our second night in our own home as a family since Miles was born a month prior.

A few months after coming home with Miles, we then returned to the familiar Frankie’s Den following Miles’ second operation – to remove the section of bowel affected by Hirschsprung’s. If not already in use, we are hoping to stay in one of the PPBF flats once more while Miles recovers from his stoma reversal in a few weeks’ time.

It is hoped that after all this, Miles should lead a relatively normal life. As I am writing this, he is now 6 months, but check ups will likely be required until he is a young adult.

Frankie’s Den and the PPBF have been a lifeline for us. During the darkest, most frightening days of our lives, we have had a safe, comfortable space in which to deal with our family’s situation. A space removed from the hospital, but virtually on hospital grounds. A homely space, when you feel so far away from home.

We are eternally grateful for the PPBF, Frankie’s Den, and all of you who donate to the Foundation. You are making such a difference. Please, ‘Buy a Night’, and you will make the most significant impact to a family going through something unimaginable.

Our trio of flats are located within 100 steps of the entrance to Southampton Hospital, for Guernsey families to use for free when their baby or child is poorly. When you Buy-A-Night, you are helping to keep our doors open for more families like Charlie’s. You can also make general donations to other aspects of the PPBF’s work here including Baby Boxes and neonatal equipment for Guernsey’s Hospital.