A Dads Point Of View
By Christer Larsson – KEEPTHEBEAT Trustee
Father of Sofia Larsson (Atrial Septal Defect (ASD), a large Ventricular Septal Defect (VSD) and Partial Anomolous Pulmonary Venous Connections (PAPVC))
I’ve wanted to write about what it’s like being a dad to a child with CHD and all the feelings and emotions you go through day to day for a while.
What it’s like finding out your child is ill, how you cope living in hospital for long periods and how you adjust when you come back home and try to settle into a ‘normal’ routine. It’s always been clear to me that it’s quite different for a mum than it is a dad. Not better or worse, just different. I’ve read lots of stories by mums online which I’ve taken great comfort from, however even though I can empathise with them it’s never really truly represented how I’ve felt, just part of it. That’s why I thought I’d write this short story, to try and share my experience with other dads, and mums of course. I won’t write too much about the details of my daughter’s condition as my wife has done that already. You can read about that under ‘Sofia’s Story’ in the same section as this.
Right from the start when my wife and I first found out something was not right with our daughter our approach and the way we dealt with everything were quite different. I always had a tendency to trust every word a doctor or nurse told me, after all they are the professionals. They look after sick children for a living.
My wife on the other hand always seemed to question a lot of what was said and wanted to have more of a discussion. She didn’t take their word for everything, not if her gut instinct told her something different. I got quite annoyed with her a lot of the time and didn’t quite see why she had to question so much. I suppose I felt that she should just let them get on with it and take their word for it, like I did. As it happens there is a very good chance my daughter would not be alive today would it not have been for my wife always following her gut instinct all the way from before we found out about her condition through to her time in hospital and still today.
I still feel like a bit of an idiot for not being more like her. She seems to know every time our daughter is about to get sick and I still don’t see it coming. I find that very frustrating. Granted I now question things a lot more when I see a doctor or nurse if I feel different to them or feel I have something to add. I’ve learnt that they also prefer to work more closely with parents. They want to hear if you feel different to them or if you think you have spotted something they may not have. One nurse told me, you know your child better than we do and you spend 24 hours a day with them so you are bound to notice things we don’t. That seems very obvious now when I look back. However, for me, and perhaps for dads in general, I don’t think we have that same intuition as most mothers do when it comes to spotting that something isn’t quite right with your child. I must admit I still heavily rely on my wife, I don’t think I’ve been the first to spot anything yet. Not that it’s a competition.
When we first found out just how sick our daughter was I initially took a bit of a step back and tried to make sure my wife could be as close to our daughter as possible. That seemed best at the time, after all she was the one that proved to know her best while I had failed to spot all of the things that she saw. I wish I wouldn’t have now as after a while I began to realise that she needed us both just as much. That seems obvious now, but for me it wasn’t at first.
I remember the first time I felt like I was really helping make a difference to my daughters health. She had just had her first surgery and my wife got to hold her in intensive care, despite all of the wires. I thought this seemed risky and we should probably try not to move or touch her too much as one of the wires could come out and something terrible could happen. I knew from the look of my wife and the nurse that not picking her up was a bad idea. Again I was proved wrong. You could tell from the second she was picked up that she felt my wife’s presence, her sats instantly improved. I quickly declined to hold her as I didn’t want to rock the boat, she was comfortable with my wife and I would most likely not have the same effect anyway. They convinced me to hold her the day after and I reluctantly agreed. Holding a baby can be nerve-racking in itself but holding your own daughter attached to what felt like more wires and tubes than actual baby terrified me. Much to my surprise I could tell what a difference it made to her when I held her, just like when my wife had held her the previous day. I think this was the turning point for me, when I realised I had just as big a part to play as my wife did. Other than both my kids being born, that’s probably the proudest moment of my life. I think my biggest piece of advice to any dad would be not to take a step back and just let mum get on with things because they seem better at it.
After being admitted, we spent about 3 months in hospital. My wife spent every single day in hospital with our daughter. As we also have a second daughter I couldn’t always stay in hospital as she obviously needed us as well. I can’t tell you how torn I felt. One child in hospital that was very sick, but at the same time the pressure of not forgetting you have another child, still very young who still doesn’t quite grasp what’s going on and needs your attention. I’m not sure how I dealt with it at the time but I think we made the best out of a bad situation. We had our older daughter in hospital as often as we could, sometimes every day. One great thing about Glenfield hospital is that they have got lots of things for siblings to do and the staff are so accommodating with you. They know this is your second home now and they make things a lot easier for you. After the first month though I started to see that our eldest daughter was starting to struggle spending so much time in hospital so she started staying with her grandparents more often. I would generally drive home every day to say goodnight to her and then get up and eat breakfast with her. I would then drive back to the hospital and spend the day with my wife and our daughter in hospital. I would often bring our eldest daughter along after she’d had a day’s break for some time with her mum.
Before Sofia was born my wife had never spent a night away from our other daughter who was about 2 1/2 years old at the time. I think this was a massive shock to the system for both my wife and daughter when overnight she suddenly moved into hospital for 3 months. As a result I spent a lot of nights home on my own with our daughter. If my daughter wakes up in the night 10 times out of 10 she will ask for mum, and often she’s upset if she wakes up in the night. I’m sure it’s similar for other parents. I found this impossible at times. Our daughter missed her mum like crazy, and when she woke up in the night she would always scream for her and when she realised why she wasn’t there she would scream even more, almost hysterical. How helpless and crap can you feel? She would only go back to sleep because she was so tired from crying and I would inevitably not go back to sleep at all. It seemed there was nothing I could do to comfort her. I did eventually manage to comfort her towards the end just before my wife and Sofia came home. One of the many good things that has come out of this, and yes I think there are some good amongst the bad, is that we are so incredibly close now.
I was one of a lucky few who worked for a company that said, “take the time off and come back when you’re ready”, and they still paid me in full each month. I saw some dads who were not as fortunate and had to go back to work with their child still in hospital so I was quite lucky in this way.
Right from the start through to today I’ve found that you get support from places I never thought I would. Surprisingly I found that people I never expected to ask how I’m feeling or for me to be opening up to were people I hardly knew, and the people I probably thought I could rely on the most other than family were people I hardly spoke to or more to the point never really showed much interest in what I was going through. For a short period of time these were people that really made me quite disappointed. What a time to go missing I thought. Now though I look back at these people with no resentment what so ever. How could they possibly understand what you’re going through? Yourself, you live a very intense day-to-day life with worries that make everything you’ve ever worried about seem insignificant and this intensity in turn tends to magnify everything else and makes some things seem bigger than they actually are. Like people who don’t ask how you’re getting on. For them nothing has changed and for you everything has so I think it’s very different for them and I don’t think you can possibly expect them to understand. For me the most important thing was always to make sure we had people to talk to and we were lucky enough to meet lots of other parents and two in particular that gave us a lot of support.
Support is something I look back on now and think it’s just so important to surround yourself with a support network. Trying to do things on your own is just foolish in my opinion, you need all the help you can get because having a child with CHD is not short term it changes life forever. It’s so draining at times with all the worries you have that you need a release, and for me that’s talking to people about how I feel and running. My daughter is now two and a half and still needs more surgery. Her being ill is just day to day life now and it’s so normal that sometimes I don’t think it effects me, and then all of a sudden I get really exhausted or upset over something really small and pathetic it’s not even worth getting upset about and I get reminded why. The worry certainly takes its toll. That’s why I think it’s important to keep yourself active and do the things you feel helps you release some of that pressure.
I have a very good friend who is a paediatric doctor over in the states. Early on when I found out that my daughter had a heart condition I turned to him for advice and comfort I suppose. We hadn’t spoken for a while but he was great right from the start. He didn’t focus too much on my daughter’s illness other than to reassure me we have great doctors who know what they are doing, which was of course true. Instead he mainly focused on telling me how to deal with what we were going through. To look after ourselves as best as we could to make sure we were fit enough to look after our daughter. I didn’t think it at the time but this was the best bit of advice that anyone ever gave me. What you go through, either during intense stays in hospital or living at home with a sick child, is very draining and if you don’t look after yourself you’ll burn out. True looking after your child is the most important thing, but I think he is right in that you can do a better job if mentally and physically you’re in as good a place as possible yourself. So I tend to take time to do the things that help me stay fit, like going running and talking to my wife and close friends when I feel I need to. For me that works really well.