“What is it like being a ‘heart’ dad? It’s scary.”

I have a child with a congenital heart defect which was diagnosed at her 20 week scan. When we went to have the scan, I was looking forward to seeing how our baby had grown although I knew as well that the purpose of the scan was to check for any problems, so I was a little anxious too. The sonographer told us to go for a walk and come back after an hour or so as she couldn’t get a good view on our baby’s heart which made me a little concerned and when we returned and there was someone else in the room to take a second look I wasn’t sure what to expect.

It was a turbulent day since it was only 10am and we had found out that our baby had a serious heart problem. The system was at its best though as we were given an appointment that day at the specialist unit in Oxford to get a proper diagnosis. By the time we got home that night around 7pm we had gone from thinking everything was fine to having a reasonable understanding that our baby had serious problems and might not even live more than a few days.

Over the next few months our understanding grew and at the same time as we went to each appointment there were times of hope, despair and times when things hadn’t changed so the outlook was no better but no worse either. We tried to bond with Jessica as much as possible before she was born as we didn’t know how much time we would have. The scan marked a huge turning point for me – suddenly we changed from just being expectant parents to having to make some big decisions and trying to get to know our baby as much as possible whilst she was still in the womb. It was easier for Louise in many ways because she was feeling all of Jessica’s movements and always connected to her but I tried to bond as much as I could too. It helped that I didn’t feel that I had to always be the strong one – we both had times when we got upset and emotional and we took turns in supporting each other through it all.

The prognosis for Jessica was bleak as she had a restrictive atrial septum but we were very lucky to be offered fetal surgery to perform an atrial septostomy when Louise was 28 weeks’ pregnant. Going for this surgery was very scary – we were told that there was a 10 – 50% chance that Jessica wouldn’t survive the procedure but we were desperate to give her the best chance of being suitable for surgery that we could. The sense of relief when the surgery was successfully performed was enormous and for the rest of the pregnancy, we both clung to that small glimmer of hope that the surgery has given us.

The birth was difficult emotionally. My feelings were so mixed – I was excited that Jessica had made it this far and I’d finally get to see her after only having seen pictures and felt her kicks but at the same time it could be the beginning of the last few days and I was really scared that it was just going to be all over. It was such a relief to hear that Jessica looked quite well when she arrived, but it was all such a blur, with so many people in the room and so much going on. She was taken away to the neonatal unit within minutes and when we went to see her, there was just so much activity – we were squeezed into such a little space and it seemed like there were people everywhere.

Jessica needed surgery just a few short hours after her birth, it was so hard to process it all, it was just too much. We were told what was going to happen, what the surgery involved and all I could think of was that we’d only had her a few hours and then she was gone again and we didn’t know what the outcome would be. Consenting to surgery was hard although being given the choice between her having a chance of surviving if she had it and dying if she didn’t, in some ways made it easier.

One of the hardest things when your child is undergoing surgery is the waiting. That’s the thing that’s different for everyone, how do you deal with it? Do you try not to think about it, do you sleep, go for a walk, or do you just wait? When Jessica had her Norwood procedure at Christmas, she was in theatre for hours and the waiting felt endless. I tried to switch off and not think about it, but in my head, I kept playing back the time before she went into surgery, scared that it could be my last memories of her and trying to hang on to them. It was such a huge relief each time to hear that she was out of surgery and back on the intensive care unit (ICU).

Being in ICU is like being in a different world. Suddenly you’re engrossed in this world within the hospital walls and you’re almost insulated from the outside world. Nothing else seems to matter other than how your child is. It’s a rollercoaster ride – living hour by hour. One minute things can be good, the next they can look really bad. With each shift, there’s a plan, the team are monitoring all these little strands and trying to keep them moving in a positive direction.

Having to go back to work and leave my family behind in the hospital was hard. In some ways focusing on work was an escape but time with Jessica felt so precious and not being able to spend that time with her was so tough. I missed her, I missed Louise and whilst I was kept constantly updated, it was hard not being able to be there to support them both. I was so happy when Jessica was finally able to come home at four weeks old and we were able to finally have our first taste of normal family life together.

What has also been hard is going back in for surgeries once Jessica came home. You’re going back and taking in a baby that seems quite well and has learned new things and you know they’re going to go to surgery and when they come back they’ll be quite ill for a while. It’s like a step back, you know it has to happen but you don’t know how difficult the path to recovery is going to be. Each time you know more and that makes it easier in some respects because you know what a turbulent journey it can be, but it scares you. Sometimes knowing less is better because you can’t be tormented by the possibilities if you don’t know them. It’s scary seeing children so ill, knowing that some don’t survive and feeling scared that one day it will be your child. I have to shut it out to deal with it, and just get on with everyday life but it’s like a box that you try and put all the horribleness in but then you open it a crack and it all comes out and that can be overwhelming. It always shocks me when it happens, the depth of the emotion as I relive the journey but at the same time it makes me realise how lucky I am.

We know that Jessica will need another major operation in the next year or so. This is something I try not to think about as it makes me really apprehensive when I do. However, we know that she needs to have this surgery in order to survive. Even if our time with her is short, seeing how she enjoys life to the full brings us so much joy and the fact that she has had such a positive impact on so many lives makes every step of the journey worth it. Even if it all ended tomorrow it would still have been worth it.