Being dad to #prematurerockstars

Matt's twin sons, Sam and Harry, were born prematurely at 25 weeks’ gestation in 2015. Sadly, Sam passed away in hospital at 16 days old

We will always remember Monday 5 October 2015. On the night of 4 October it had got too much, so we went to Russell Hall Hospital to be checked. Then suddenly my wife Sal's waters broke. We started to panic when they said we needed to be transferred to a hospital with specialist care, as Sal was only 25 weeks gone. Before we could think, the ambulance arrived and we headed to Coventry. It was around 6am and, after making a couple of calls to work and family, Sal started to get really uncomfortable. But before they had a chance to come into the room, Sam, all 1lb 12oz of him, was with us.

The next hour is a bit of a blur, but more than anything I remember thinking, "It'll be OK – they're here now". We'd already chosen the names Samuel and Harry, so decided the first-born would be Sam. 45 minutes later, with over 20 doctors and nurses with us, Harry arrived, weighing 1lb 10oz. As I always say to people, that's around three quarters of a bag of sugar. Sal got to say a brief hello to Harry before both were whisked away to the NICU.

Second time around

Our daughter, Isabelle, was born six weeks early back in 2011 so we had some experience of NICU but this time was very different. The boys were so small – in incubators, ventilated and covered in wires and leads. We couldn't hold them; we couldn't do a lot. Unless you've seen a prem baby, it's hard to explain how tiny they actually were. Photos don't do it justice. I always say to people that they had no bum! The muscle is so under-developed that the natural contours of the body just aren’t there.

Over the first week lots of tests were done, and we started to understand the huge monitoring sheets. Their prematurity meant under-developed lungs, giving them chronic lung disease. Both also had an open valve on the heart (patent ductus arteriosus, or PDA). As drug treatment didn't close the PDA, we were told surgery could be needed. Worry doesn't describe it. As a dad you have that natural instinct to protect but what can you do? You feel useless. You do what you can, changing nappies or bringing in supplies, but is that it? I kept a list of things to ask the doctors as you try to bring some elements of control into life.

Torn between two worlds

Matt with wife Sal enjoying skin-to-skin with Sam

Towards the end of week two, we were told a bleed on Sam's brain had grown and he would most likely develop cerebral palsy. They were struggling to keep his blood pressure under control and his breathing supported; the next 48 hours were critical. You can't really think or focus on anything; you need and want to be there but I also needed to support Harry and Isabelle. Where should you be? What should you do? I don’t think there is any manual on what to do in these circumstances. The anxiety inevitably gets to you: I managed to sleep, as I was so tired, but would wake very early every day. You try to eat, with everyone telling you how strong you are, but on the inside you are in bits.

We all respond differently in these situations and anything any dad does would be the right thing for them and their family. There is no right or wrong. Should you be crying? Should you be angry? I don’t think either is wrong. I felt I needed to do something practical. I started working out how we would need to convert the house in case Sam needed a wheelchair.

Heartbreak

Sam got through those 48 hours. I remember it like it was yesterday - leaving the hospital that Monday night, talking about how we would give Sam the best life possible. And then we got the call at about 3am to say Sam was struggling and we should go over, so we did. You take a deep breath, you worry, Sal was crying, you know what might be coming, you just want to know. Sam kept fighting but the time came when there was nothing more they could do. We had to make the awful, heart-breaking decision to switch off his life support machines. He passed away in our arms later that morning. The nurses were nothing short of incredible, giving us the opportunity to spend as much time as we needed with our little boy, taking photos for us while we cuddled him and gave him a bath.

I failed to protect my boy, I couldn’t save him, you want your kids to have opportunities in life but Sam didn’t get any opportunities. Where to be? How to react? It sounds weird but I remember us eating a jacket potato in the canteen that afternoon. We needed to organise a funeral - I’d never done that before. Should I be crying? I wasn’t. What should I do? We had to be strong for Harry.

I started organising the funeral, thinking, "This is the only party we will get to throw for him". Friends and family were great and this became the first of many fundraising ventures. The money raised from Sam’s funeral funded more special chairs in the unit at Coventry for other parents to use. The funeral was tough, I spoke because I felt I needed to, it was the thing to do. I remember being really upset and nervous but read some words from Sal about her boy. I talked about not being able to form our 5-a-side football team now.

Bringing Harry home

Matt with Harry at 20 months (16 months corrected)

Despite eight weeks that I wouldn't wish on anyone, it was hard to leave when Harry became well enough to be transferred closer to home and Russell Hall Hospital. Coventry Hospital and the staff still have a special place in our lives and I’m still in touch with some staff, attending some events. It’s the only place Sam lived and we won’t forget it. Unless you live this experience no words will ever describe how amazing the staff are in a neonatal unit and they were brilliant with us every day.

Harry continued to make slow and steady progress but there was concern the ventilation had given him an eye disease (ROP) and his vision could be affected. Two laser eye surgeries were a success and Harry was closer to coming home. After 107 days, Harry finally came home, complete with oxygen tanks. That dad protection feeling kicks in again while carrying your son with an oxygen tank – every person or animal is a threat to those leads. Don’t touch! This is where I can now be Dad and protect him!

The experience of premature birth defines you. Harry is nearly five and looking forward to starting to school. I still see him as our #prematurerockstar and we are regular visitors to “Sam’s garden”, as we call his grave. We are open with Harry and Isabelle about Sam. We talk about what life would be like with all three of them. Sometimes, out of nowhere, Harry will ask if Sam can come to his party or he will do a picture for him. Your heart breaks. I couldn`t protect Sam, and Harry won`t get to know his twin. You get angry but at the same time want to remember Sam. Fundraising in his name, I like to think, is his legacy and him having the opportunity to make a difference.

The journey continues

The journey and experience didn’t end at the hospital door after those 107 days. Physically, Harry is doing amazingly well but spells of physio, speech and language therapy, dietician appointments and re-admissions for recurring pneumonia are all part
of the journey.

You love your kids unconditionally but it’s like you feel that extra need to wrap him up in cotton wool away from the world and protect him after this experience. I talk about our experience to people, I’m open to anyone. Do I talk about it too much and should I move on? I just always think talking about it is a way of us remembering Sam. People always say “it’s good to talk” and that’s not a normal thing for “blokes” – it’ll be fine, look after your family. I think being open is the best way to look after your family and talking through ways to support you and your family can only improve your mental health. #DadsdoNICU is important to encourage all us dads with these experiences to open up about our feelings and support the next dad that will experience this and help them support their family.

Matt with Isabelle and Harry, who will start school in September

Talking about our boys

When you meet new people and they ask you if you have kids, do you say two, for an easier conversation – but I feel that's disrespecting Sam – or do you say three and have to explain, then people feel awkward? Every year since, we have released balloons for Sam on his birthday and I hope we don`t stop doing this. Milestones are hard and when Harry starts school in September, knowing Sam will not have this opportunity will be tough. However, let’s talk about that it should also have been Sam’s first day, let’s remember those days in hospital and those nights of worry, let’s remember the appointments and let’s talk about it. All babies born premature are #prematurerockstars and dads, please talk about how you feel as that will be the best way to support your family and also support other dads.