Organ Donation Week: Enzo's story

Enzo and his twin sister, Savannah, were born prematurely at 27 weeks. Sadly, Savannah passed away after developing necrotizing enterocolitis (NEC), a serious illness in which tissues in the intestine become inflamed and start to die. Soon after losing his twin sister, Enzo developed the same condition and was rushed to Great Ormond Street Hospital (GOSH). His dad, Pier Francesco, shares their story.

“After we got to GOSH and Enzo had scans, we were in the neonatal intensive care unit (NICU) for several hours. Professor Paolo De Coppi came to talk to us about surgery. The operation lasted several hours and Enzo’s large intestine, his colon, and most of his small intestine were removed.

“It was an awful time as we had just lost our daughter the day before, but I couldn’t have asked for anything better in the way staff dealt with us.

“After the operation he spent 45 days in ICU before being transferred onto a ward. He had a stoma and his mum Lianne was living there for six months up until Christmas, when he had his stoma reversed. He was still on total parenteral nutrition (TPN) which meant that the nutrients he needed to survive were being pumped into his bloodstream directly.

“There’s many different types of short bowel syndrome. Enzo has severe short bowel syndrome which means he struggles to absorb the nutrients of food. As he has very little intestine left, it puts restrictions on his diet.

“The parenteral nutrition team were fantastic in training us up on how to use TPN and his Hickman line at home. From birth to being back at home, it was almost a year. He has been under the care of clinical teams at GOSH ever since.”

“As he had his Hickman line and was a lot smaller than his peers, we were slow and cautious to get him into nursery, but when we did, he loved it and was full of energy. But one day, he came home with a bump on his head. He was on a lot of medicines that suppressed his immune system and that night we ended up in our local hospital again. In the early hours we were told he was going into septic shock and we were rushed back to GOSH.

“We spent another 45 days in ICU. He was in a coma for three weeks and his fingers and toes turned black. It was a nightmare not knowing if he was going to live. He ended up losing one of his toes, but the staff did everything they could and eventually he pulled through.

“We then spent four months in Rainforest ward. He couldn’t speak, move or lift his head up. It took about two months for him to learn how to pick himself up and talk again. He also developed osteomyelitis of the hip because of the sepsis, so he was on lots of IV antibiotics for the remainder of our time in hospital.

“When you’re going through this with your child, you try and be there as much as possible, but sometimes you need to go out and clear your head. I remember going out to get some dinner and the nurses let me know that Professor De Coppi had popped in to see Enzo just to say hello, which was great.

“We stayed in various charity-funded accommodation while at GOSH which was a real help given we do not live locally.

“All of the staff were brilliant, especially the Play team. They were fantastic at trying to keep him entertained. They did everything, from playing skittles to catch to sing-songs. When you needed a break, they would come in and sit with Enzo for half an hour and paint with him.

“The Play team are so important for the mental wellbeing of children in hospital. Hospital is only part of the cure – children need that wellbeing and they need to be happy to get better. The Play team gave us a lot of that.

“Enzo also enjoyed his time at the hospital school. We got so much out of being there and got a little portfolio for him to take back. We’ve also been to the Christmas ball twice, which he absolutely loved.”

“Enzo started taking part in a clinical research trial in 2017 to reduce the need for TPN and increase the absorptive capacity of his existing bowel via a subcutaneous injection. He has an injection every day, with a certain amount of units based on his weight. It’s an enzyme that helps to speed up the reactions in his gut but slow the speed at which food moves through it.

“On New Year’s Eve in 2018, we were out at a party and he spiked a temperature. We were back in our local hospital fifteen minutes before all the fireworks, and he had his line removed.

We then went back to GOSH to discuss the trial and since then he hasn’t had his line.

“The trial has been a beacon of hope for us and exceeded our expectations. During the pandemic, we’ve continued to do the trial from home and are having phone calls with the CRF teams rather than visits. Enzo makes a scene nearly every morning about the injection, but he’s used to it!”

“I’ve looked into all of Professor De Coppi’s research, I keep track of it like a hawk!

“If Enzo was offered a bowel transplant today, I couldn’t accept it because there’s a risk of it rejecting. He hasn’t got enough bowel left to do anything with if it did reject. If there was an option for children to receive rejection-free transplants, that would be the holy grail. It would be incredible if children didn’t have to go through everything Enzo has. This latest research sounds very promising – research offers hope and as parents, that’s all we’ve got.

“You’ve always got to be hopeful when at GOSH. We were in a bad position, but then we looked around at other families going through equally bad times and their children were still happy and hopeful. All we can ask for in life is that our children are happy and as well as they can be.”

“These days, Enzo loves running, WWE wrestling, playing computer games and being social. It’s all a bit hard for him currently given the pandemic, but he’ll bounce back once it’s all over. He can’t wait to be back at school with all his friends.

“As a family we’re looking forward to visiting parks, beaches and Butlin’s again. We’re pretty active in going out and exploring because his condition has stopped us from going abroad, so we’ve pretty much toured the whole of the UK!”