Life after my baby’s Hirschsprung’s disease diagnosis

The first day of my son Henry’s life was our only “normal” one together.

The following day, Henry was in intensive care, waiting for a specialist team to arrive from St Michael’s Hospital in Bristol. Our doctors had told us he was in a critical condition, and needed to be transferred there. It was as if he had become ill all of a sudden. One minute, he was okay, and the next he had started to vomit green fluid, and he hadn’t yet had bowel movement.

When the team from St Michael’s arrived, I was told by one of them that Henry was so ill that there was only a 50% chance that he would survive. I couldn’t stop thinking:

“My little, amazing, beautiful baby boy could die. This can’t be happening.”

Treating the symptoms

At St Michael’s Hospital, he was rushed in and attached to what felt like hundreds of monitors, tubes and IV drips. His stomach at this stage was extremely bloated. Teams of doctors and nurses were rushing in every direction, coming and going. I have never felt so afraid in my life.

A doctor told me that it looked as though there was a problem with Henry’s bowel. He needed a contrast x-ray, which can clear blockages in the stomach. They hoped it would help Henry. I held on to that hope as they took him down. As soon as he came back and we spoke to the doctor, it became clear that Henry didn’t just have a blockage.

The doctors began talking about lots of different conditions and diseases. I remember so clearly the two amazing nurses, Corrine and Millie, who came in to treat Henry with a rectal washout. I felt so much relief when what was effectively poisoning my little boy was washed out, and his stomach finally began to deflate.

Confirming the diagnosis

Days later, Henry underwent a biopsy of the bowel wall, which confirmed his diagnosis: Hirschsprung’s Disease. By then we had started to learn how to do the rectal washouts.

It was so scary in the beginning, but it has become second nature to us now.

When Henry’s surgeon gave us the diagnosis, it set off a wave of emotions that I can’t really explain. It meant we knew what his condition is called; it confirmed that our son had a disease. But that’s all we knew. We had a million questions. Lots more tears. We met Henry’s specialist nurse for the first time – an amazing lady who has supported us so much. We were also put in contact with a wonderful support group for families affected by Hirschsprung’s Disease in the South West – there are around 90 families affected by the disease in the region.

We finally got to go home on 5 February 2016. It was an amazing feeling. The plan was for Henry to have an operation to remove the dead bowel nine weeks later, with daily washouts to keep him well. By the time we went home, we had been apart from Henry’s sister, Liz, for two weeks, which was so hard. In total in the past year we have been away from Liz for nearly two months. I think sometimes people forget what the siblings go through.

A rare complication

Seven days after he was discharged, he became affected with enterocolitis, a rare complication of the disease which can be fatal if it is not treated quickly. He became very sick in a matter of hours. Although he was treated quickly, we weren’t able to go home again until five days later.

Henry’s surgery was on 24 March 2016, and it went brilliantly. His bowels started to work properly, and our lives started to go back to normal. But then in September 2016, everything changed. Henry had suspected enterocolitis again, and unfortunately he has continued to suffer from it since then. We have to watch what he eats, as many things cause him a lot of pain. A cold this week has caused him so much pain – I worry about him catching more serious illnesses like chicken pox.

We don’t know what the future will hold – every Hirschsprung’s case is different – and we will just have to keep trying different treatments in the hope one of them will work. To look at Henry, you would never know his daily battles, or that he has an invisible condition. I do know one thing, though: my little boy is incredibly strong, and he shows me every day what being brave means.

About Samantha

Written by Samantha Hill, mum to two incredible children – Elizabeth, the best big sister in the world, and Henry, our beautiful brave Hirschsprung’s warrior. Samantha and her partner want to raise as much awareness as possible for Hirschsprung’s disease and the battle so many families go through.

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