My son Henry is the best. He’s a very happy little boy, very tolerant, patient and he’s an absolute pleasure to be around – what more can you want from your child?
You’d never guess what Henry has been through in his little life, and what he has to contend with every day. Henry is our hero, our inspiration and our absolute world. This is why…
When Henry was born, we found out he had a life-threatening condition – a twisted bowel. While we were dealing with the trauma of this, he was also diagnosed with cystic fibrosis. Before Henry came into our lives, his dad, Adam, and I didn’t know much at all about cystic fibrosis. But when we found out just days after he was born we immersed ourselves in all the information out there to find out how we could help our child.
So, Henry’s battle started when he was born. My pregnancy had been normal and when he arrived, we couldn’t pull our eyes away from his beautiful face. But Adam noticed he had a large tummy. Henry looked like a little body builder in fact, his head was smaller than his stomach.
We pointed it out to the midwife and within hours, Henry was rushed to intensive care at Sheffield Children’s Hospital from Jessop maternity hospital – and I was left behind. Despite being told I had to wait to be discharged, I did it myself. I wasn’t going to be separated from my boy… I would walk if I had to!
There were lots of tests, but the doctors couldn’t quite tell what was wrong. We were told the worst outcome would be that Henry had a twisted bowel and this would stop it functioning. Sadly, an X-Ray revealed it was indeed this. Henry needed an emergency operation at just 13 hours old.
What do you do when your baby is in a theatre being operated on? Adam and I are calm, rational people, but it doesn’t stop you thinking the worst when your baby is taken from you.
By this point, we hadn’t slept for three days. We were exhausted. In the haze of all of this, someone mentioned The Sick Children’s Trust to us, somewhere we could have a room to stay at a place called ‘Magnolia House’ which was just down the corridor from intensive care.
Magnolia House helped us so much throughout our time at Sheffield Children’s Hospital – it would have been ten times worse being at home, away from our baby. Knowing we were just minutes away from Henry in Magnolia House was a relief – we knew we could be there in just two minutes.
Henry was strong, just like his mum and dad, and made it out of surgery after six hours, having had 50% of his bowel removed. His bowel was twisted and it was also blocked… he wouldn’t be able to feed. However they fitted a long line into his main vein so he could get all the nutrients he needed via a tube. This method of feeding is known as total parenteral nutrition (TPN). At this time he was surviving on just a teaspoon worth of feed.
As Henry grew strong and was able to move onto milk, Magnolia House played a huge role. I could express and take his milk to him to help him grow stronger. I would go and visit him in the early hours of the morning, when no one else was about, when it was calm and peaceful to feed – just like I would’ve done at home. I could bond with him this way. I also used to have two snuggle cloths, one for him, one for me, which I’d swap, so even though we weren’t physically together – it was as if we were.
Following his operation, Henry’s liver stopped working. He went for a special X-Ray and made him radioactive – like the Hulk we thought – we had to keep him by wedging blankets around him still - and we had to keep him asleep! He had a blood transfusion too, but he’s a tough little cookie and after five weeks and a day he was discharged from the surgical ward. It’s not that long compared to a lot of families who were at Magnolia House, but it felt like a lifetime. For us and many others staying at Magnolia House, having a ‘Home from Home’ was incredible. I was a new mum and had to take care of myself. At the end of the day, your priority is your baby, your needs always come second, but Magnolia House made it possible for us to take care of ourselves as well as being there with Henry.
As I mentioned, it was while we were in hospital that we were told Henry had cystic fibrosis. Cystic fibrosis occurs in a child due to a faulty gene carried by both parents – apparently, we both have that gene. Cystic fibrosis affects every single organ, from your lungs to your digestion. It can cause diabetes and many more complications. Henry doesn’t let this bother him though, he’s such a happy child and leads life as ‘normal’ as possible. He goes to playgroup, but he can’t be near a child who has the slightest cough or cold – he could end up in hospital for two weeks if that happens. He has physio twice a day, which Adam and I have learnt, he has a diet of medicines, vitamins and supplements to help him stay strong and gain weight and every six weeks we go back to Sheffield Children’s Hospital for a check-up. And even though this sounds a lot, and it is a lot for a little boy to go through, he is the happiest child I know. And he’s doing really well. We’re a long way from where we started and since we left hospital, Henry has gone from strength to strength.
Cystic fibrosis is a life-limiting condition, but thankfully due to research, managing the condition has advanced so much that life-expectancy for those affected has become greater. 50 years ago, people born with cystic fibrosis would be lucky to live past five; now 50% of people with the condition reach 40.
By sharing Henry’s story, I hope to raise awareness of the condition and to also thank The Sick Children’s Trust for supporting us during the time Henry was in hospital and was diagnosed. Since we’ve been home, we have been busy fundraising. Recently, our family church of St Gabriel’s Greystones here in Sheffield kindly gave all the money they raised at their Autumn Fair to The Sick Children’s Trust which, together with other donations, totalled £1,250! We want to say a big ‘thank you’ to The Sick Children’s Trust for all its support; it really made a huge difference.
Miriam and Adam Sugden, Henry’s parents