Meet Hope. She’s my daughter with the broken heart. She’s no poor wee soul and she’s not a sick kid. She’s a fierce, energetic, stubborn little girl. She idolises her big brother and eats like a horse. She’s a warrior! A #CHDWarrior!
This week my wife and I have our first appointment for a few months with the paediatric cardiology specialist at the Royal Hospital for Children, Glasgow and I’m feeling reflective. My daughter has Tricuspid Atresia a type of heart disease that is present at birth (congenital heart disease), in which the tricuspid heart valve is missing or abnormally developed. The defect blocks blood flow from the right atrium to the right ventricle.
Shortened version is she has a sh*t heart, half a heart to be more specific.
She’s already had one cardiac catheter and one open heart surgery, has another open heart surgery booked for a few years time and one day she’ll need a complete heart transplant. Knowing Hope and who and how she is it doesn’t feel real typing these words. Maybe that’s part of my defence mechanism, maybe because of how well she keeps I’m just lying to myself about how serious her situation is. Who knows? Hope is like any other child. She grabs cats by the tail, she eats food that’s fallen on the floor, she gets bad nappy rash whilst teething and she despises sleep. A normal child, with a life threatening heart condition.
Both of her surgical procedures were the scariest days of my life ever. I’ve great white shark caged dived, swam in crocodile and hippo occupied waters and skydived over a desert. None of which compare to the fear of your child’s life in the hands of a complete stranger. See in those other situations I had some element of control. When you hand over your child’s life at the tender age of 6 months to someone you don’t know there is no way of knowing what’s going to happen. The anxiety and the fear are all consuming.
I’m still not sure how I got through that time. I tell a lie, I do know how I got through it. With a lot of help from my friends and family. From the people that looked after my son Ray whilst we were at the hospital to the people that checked in with me daily to see how things were going, to my boss who gave me time to deal with the situation. These people made this situation manageable. They gave my wife and me space but were also right by our sides when we needed them. Mentally I hit one of my lowest points during the time of her surgery as I was just so helpless. Thankfully the NHS is phenomenal and the staff at the Royal Hospital for Children in Glasgow are some of the greatest, most patient and caring people I’ve known. They provided a care and attention to our daughter that I was just incapable of delivering.
We’ve been very fortunate to live in a country that has fantastic medical care and so far the interventions that Hope has had have worked out amazingly well. It could be an entirely different situation. But i give thanks that it’s not. You look at my daughter playing with (beating up) her big brother and you can see no signs of this heart condition that will be with her for her entire life. For this I’m truly thankful.
Leading up to Hope’s open heart surgery I also reached out to the Bluebell Postnatal Depression service for some counselling. I had thoughts going on in my mind that I just couldn’t contain and was unable to share them with anyone close to me. For the first 6 months I failed to truly connect with my daughter because i was so scared that come the surgery she would die. I was too scared to get too attached. My own daughter. I couldn’t share this with my wife who was right in this situation with me. What sort of monster does that make me? Talking helped me to overcome this as did the fact that she didn’t die.
I only used the service for a short time but I felt the benefit. That opportunity to talk to someone who was as far removed from the situation as possible was invaluable. I can not recommend this service and many more like it enough. Just talking, can be enough but having someone who is trained not to freak out when you cry on them or share your darkest fears or feelings… that’s pretty special.
I was never diagnosed with PND and don’t claim to have had it, but I recognised a few of the signs present and the support is just as helpful even if you don’t seek/get a diagnosis.
From all of the conversations that I’ve ever had surrounding Hope and her heart condition there’s one thing that keeps coming back to me… There is nothing I can do to change her heart. I can’t fix it, I can’t do the slightest thing to change this. That can be crippling. It can be all consuming, if you let it. But I refuse. This will not define her and it will not define me as a parent. But there is something I can do. I can give her as much love as i would without the heart condition. I can treat her like any other child and nurture, respect and provide her with opportunities to grow and learn. To become a strong and confident woman and support her to enjoy life.
So if you are facing a challenge of parenting a child with a heart condition please feel free to get in touch i’m happy to talk. Hell, doesn’t matter what health problem you’re dealing with I’ll talk with you about it. I can also try and signpost you to some professional support if you want it.
If any of this sounds familiar please like, share or comment.
Thanks for reading.
Thanks for reading.