For Father’s Day, I asked my husband to share a post about his journey as a heart daddy. This is his raw and honest account of his feelings about the journey we have taken as a family so far. It has been very hard and emotional for him to share this. I would like to say a huge thank you to him for sharing his thoughts and for being such a wonderful and supportive Daddy to our two beautiful girls. I couldn’t have done this journey without his constant strength and support.
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. I knew though that the purpose of the scan was to check for any problems and so I was a bit anxious that everything would be OK. The sonographer told us to go for a walk and come back after an hour or so. She couldn’t get a good view on our baby’s heart which made me a little concerned. When we returned, 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 that day. We were given an appointment at the specialist unit in Oxford later that day 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. At the same time as we went to each appointment there were times of hope, times of despair and times when things hadn’t changed. 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 birth was difficult emotionally for us. On the one hand our baby had survived long enough to be born. We would get to see her at last. At the same time though if she was not able to be operated on then it would mark the start of the end of our time with her. We didn’t know what would happen. There were so many people in the room and so much going on.
My feelings were so mixed. I was excited that she’d 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. 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 finally arrived. It was all such blur though, with so many people in the room and so much going on. She was taken away to the neonatal unit within minutes. There was so much activity going on when we went to see her. 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. On that day, 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. 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. 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 though.
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 the waiting? 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 hours. The waiting felt endless. I tried to switch off and not think about it, like I used to do with exam results as worrying wouldn’t change the outcome. In my head though, 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.
Being in intensive care 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. You just want her to get out of there. There’s the feeling that when she’s in intensive care it could go either way. You hope she will gradually make progress and eventually get back to the ward. However, you also know that it doesn’t always turn out well. When things start to go wrong, you become very scared.
Having to go back to work and leave my family behind in the hospital was hard. Going from being so focused on being there with Jessica and Louise in the hospital and switching off from the outside world and then having to leave them and focus on work made me feel so separated from it all. In some respects, having to focus on work was an escape. Time with Jessica felt so precious though and not being able to spend that time with her was so tough. I missed her and I missed Louise. While Louise kept me 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. We were finally able to have our first taste of normal family life together.
What has also been hard is going back in for surgeries. 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. A step that hopefully should be temporary. Each time she has a major operation it’s a massive journey to get back though. 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. In some respects that makes it easier because you know what a turbulent journey it can be, but it scares you. Sometimes knowing less is better. You can’t be tormented by the possibilities if you don’t know them! It’s scary seeing children so ill, knowing that some children don’t survive. You feel scared that one day it will be your child and you will be parents of a child that is no longer living, that doesn’t make it out of intensive care.
I have to shut it out to deal with it, and just to get on with everyday life. 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 and it all comes out, the depth of the emotion as I relive the journey. At the same time it makes me realise how lucky I am.
Going back to the hospital for a scan when we were expecting Sophie was scary. It didn’t help that our first scan was in the same room where we’d found out about Jessica’s heart condition. Being able to have more detailed heart scans was reassuring as was the knowledge that the odds were in our favour of everything being all right. Sophie’s birth felt very different from Jessica’s. It was nice to have a more ‘normal’ experience. Having her arrive at home with Jessica able to meet her new baby sister within minutes of birth was wonderful.
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. I know it has to happen. Hopefully it won’t be as complex as some of the procedures she has had so far. I am sure it won’t be plain sailing though and that there could be complications which cause her to become very unwell.
At the moment she’s well and happy. It is hard to take what appears to be a well and happy child into hospital and know they will be unwell because of something you are going to do. However, we know that she needs to have this surgery in order to survive. We have always felt that we should give her the chance to live. Even if our time with her is short, seeing how she enjoys life to the full brings us so much joy. She has had such has a positive impact on so many lives and it makes every step of the journey worth it. Even if it all ended tomorrow it would still have been worth it.
Before Jessica was born, all I wanted was to do was just get to see her, to see her face. Now watching her grow and become more of her own person, I see that spark. I don’t want to lose that, that personality, that character. It’s always in your mind though, what could happen. I’m proud of her, I’m so proud of everything that she’s done and been through. She’s an amazing child and I’m just so lucky to be her daddy.”