Little Henry smiles on despite life limiting illnesses.

Little Henry Sugden is a happy smiling one year old. But behind the smiles there is a catalogue of health problems which started when Henry was born.

“When Henry was born, we found out he had a life-threatening condition – a twisted bowel,” explains his mum Miriam.

“While we were dealing with the trauma of this, he was also diagnosed with cystic fibrosis.” The Sugdens knew very little about cystic fibrosis but were determined to learn everything about it so that they could help their son.

Henry Sugden with his mum and dad Miriam and Adam

Miriam’s pregnancy had been normal but when Henry was born his dad Adam noticed he had a large tummy.

“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.”

Henry under went 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,” says Miriam.

Henry underwent a six hour operation at just 13 hours old

Sadly, an X-Ray revealed it was indeed this. Henry needed an emergency operation at just 13 hours old. “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.” The Sugdens say Magnolia House helped them so much throughout their 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.”

After six hours of surgery and having had 50 per cent of his bowel removed Henry pulled through,

Doctors 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.

Henry survived on just a teaspoon of food fed through a tube

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.”

Following his operation, Henry’s liver stopped working. He also had a blood transfusion.

“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.”

It was while they were in hospital that they were told Henry had cystic fibrosis. CF occurs in a child due to a faulty gene carried by both parents and it can affect every organ, from lungs to 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. 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 fund-raising. 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.”