‘I will always love you, little man’ – Danny’s story

Danny shares the story of losing one of his triplets to Necrotizing Enterocolitis (NEC)

The chances of conceiving triplets naturally are 1 in 10,000, and in February 2011, my wife Jo and I found out we were that lucky one! Naturally we were ecstatic, but the journey we were about to embark on was one of fear, enjoyment, disbelief and heartbreak.

From the beginning, Jo was being scanned to check our babies’ development up to three times a week. At one of these appointments, we found out we were having two identical boys (in one sac) and a singleton boy (in his own little sac).  At first the checks were reassuring and it was lovely to see the babies develop, but it began to heighten every emotion and fear we already had.

At one point, a doctor recommended we ‘reduce’ the pregnancy down to one child to allow for the best chance of survival; at another we were told the boys had a high chance of having Down’s Syndrome and were asked if we’d like to be screened in order to ‘consider the options’. We said no both times: we wanted to continue with the pregnancy for all three of our babies.

At 23 weeks, Jo had to have a suture to help her continue with the pregnancy. But at 26 weeks, in the middle of shopping for prams, Jo went into labour. When she was examined in the hospital, she was already eight centimetres dilated. But that hospital wasn’t equipped to look after premature babies, so Jo had to be ambulanced to another one nearby.

The plan was to deliver George, the baby in his own sac, who was already crowning, while trying to leave Charlie and Harry, the identical twins, inside. We were then visited by NICU nurses, paediatricians, consultants, doctors and anaesthetists to talk us through what might happen next. There was so much information being thrown at us that I don’t think I took any of it in. It was almost like I was a spectator, looking on. I felt numb and completely overwhelmed with fear, anticipation and adrenaline.

I remember looking at Jo and then glancing up to see the room being full to bursting with people, three for each baby and even more for Jo, all ready to help to give our babies a chance at life. Then it was time to start pushing. They broke Jo’s waters and she began to deliver George. I have no idea how long this went on for as we lost all sense of time.

The next thing I remember was a nurse saying they could no longer find George’s heartbeat. Suddenly, every piece of equipment which Jo was attached to was yanked from its plug socket and at least 15 doctors set off running down the corridor pushing Jo and all the equipment she and the babies would need. I was running down the corridor alongside Jo holding her hand until we came to a big set of double doors. I gave her a kiss and she was gone, taken into theatre for an emergency c-section. I was left standing on my own in the corridor, catching a final glimpse of Jo as the doors rocked to a close. Then it was silent.

Someone peeked around the door and suggested I wait in the room behind me. I don’t know if they knew it or not, but it was a janitor’s cupboard. So, there I was, surrounded by mops and brushes while my wife was in surgery. I have no idea how long I was in that cupboard but it felt like years. Then a neonatal nurse found me and asked if I’d like to see my boys before they went into intensive care. This was the first time anyone had spoken to me, the first time I heard my boys had been born.

The nurse took me to see Charlie, Harry and George. They were covered from head to toe in wires, inside what looked like zip lock bags with just their heads out to keep them warm. I can’t begin to explain what it was like to see them like that. I don’t think my brain would allow to me process it at that time. But they were here, and alive. Charlie weighed 1lb 6oz, Harry 1lb 12oz, and George only 1lb.

A few hours after giving birth, Jo got to meet her boys for the first time. But she then got an infection which meant she could not go to the NICU for five days, which broke her heart. Once she was able to go onto the unit again, I had been told that I had to go back to work, so even this was bitter sweet. For the next five days, I slept at the hospital and went to work from there until Jo was allowed home.

The next few weeks was a series of ups and downs. In just a matter of hours the boys would go from doing amazingly well to being in a critical condition. We went through multiple blood transfusions, infections, blood gases, tolerating milk, Bradycardias, de-saturations, collapsed lungs and surgeries. It’s amazing how quickly you pick up what all the machines do and the noises they each make.

At five weeks old Harry got a serious infection of the gut known as Necrotizing Enterocolitis (NEC). He needed surgery to find out the extent of the infection, which found that the infection had destroyed all but 5cm of his gut and that there was nothing the doctors would be able to do for him. The doctors told us that there were two options: to stitch up his wound and ‘see how long he survives’ on the ward, or to remove his care. We had to make the hardest decision of our lives and we decided to withdraw Harry’s care so he wouldn’t suffer any more pain.

Because Harry had been so poorly, I hadn’t been able to hold him. The first time I was able to hold my son was as I carried him down to the Snowdrop Suite where we would spend his final hours together. Harry died in my arms just before midnight on the 9th August 2011.

Just one day later we were back at the hospital for Charlie and George. Everything was so raw and yet we were back in the same room looking at an empty space where Harry had been only one night before.

Charlie and George’s journey through neonatal care was not without its setbacks. They both regularly got infections and Charlie was suspected to also have NEC which thankfully was treated with antibiotics. Charlie also had two collapsed lungs and had to be put back onto the ventilator for a short while. Because of his extremely low birth weight, George’s eyes had not fully developed, so he had to have surgery. But they kept fighting and getting stronger. After just less than three months, they were transferred back to our local hospital and a couple of weeks after that, they could come home although George still only weighed 3lb and Charlie 4lb.

The boys are now nine years old. Over the past year, George has started to show signs of suspected mild cerebral palsy while Charlie has spastic paraplegic cerebral palsy which means he is fully dependent on a wheelchair. Charlie is such a funny, determined young man and George is so caring and kind that they make us very proud every day.

Even after our ordeal, we went on to have two more children: Tommy who is 4 and Hettie who is 1. It’s true that time does help with grief, but we will always wonder who Harry would have grown up into, and that will never change.

I will always love you loads, little man - Dad xx