Hi, this is my story and personal perspective of entering a world previously unknown to me.
I’m Dad to Ava - 7 in May, with heterotaxy, LAI with IIVC with Azygous drainage, polysplenia, right sided stomach, midline liver, two bi-lobed lungs, and LADDs performed at 7 months old with appendectomy.
We fell pregnant on honeymoon, and I couldn’t wait, having a niece and nephew I thought I knew what I could expect. Things got exciting for me as we came up to the 20 week scan, it was time to see our little miracle of life getting bigger. We get to find out if it’s a boy or girl, and get to see it wave it’s little hand at us…I could then start to plan whether it’s football and karate for my little dude, or whether Daddy will be looking after my little princess, and painting stuff pink.
I completely missed the obvious clues of it being called an anomaly scan, why would anything go wrong? As we sat there looking at this beautiful image in front of us, it suddenly took a turn the wrong way. The sonographer wasn’t sure what she could see, so went to get someone else to have a look. Panic sets in, this shouldn’t happen, someone tell me what’s wrong! As more people come in and try to understand what they are looking at, you feel the fear rise inside, if they don’t know what’s wrong, this can’t be good. We are told to come back tomorrow to see the senior sonographer. We break down, but know at least we have a little girl now.
I believe I’m a strong guy, I’ve done martial arts for over 24 years and learnt how to keep control, but I am an emotional person. This was literally tearing through me. That next day seemed like it took forever to come.
As we went back, walking into the unknown, it felt like night and day vs 24 hrs ago, nervous, scared, wondering what it means….and the scan didn’t help. He too had never seen it in 20 years of scanning, they noticed her stomach on the right. More people came in to help, and we felt like bystanders in some bizarre medical programme.
Why is this happening to us, why can’t I stop this, hold my wife and make everything ok? It’s my job to protect her and I’m failing her. We then went through rounds of scans both at Reading and Oxford at the children’s specialist hospital, and privately in London to see the best there was to understand the issue.
As soon as we found a diagnosis of some kind, I hit the internet. I spent all my time on it, at work I did the minimal possible to survive and spent time looking for answers instead. This was my mission now, to understand what our doctors didn’t, and try to help. I felt completely helpless and my position of protecting my wife and child had gone out the window, how could I protect them from this? In a way I wished I hadn’t turned to the net. What I found after countless hours/days/weeks was what most people have probably encountered now, massive odds of having this condition, with very bad prognosis (80% mortality rate by 1 etc.). There wasn’t the forum there is today, and examples were few and far between, and most seemed bleak.
I couldn’t share half of what I found with Mel, as she had so much going on already, as she was carrying Ava and dealing with everything inside her both mentally and physically. I felt my duty was to help provide hope and hide the problems the condition could provide, I had to do something to protect her, as otherwise I felt hopeless. Looking back, I’m not sure the approach helped either of us.
This happy time was turning into a survival game, and not one I was enjoying. We were the first of our mates to go through having a child, I felt massively alone in this struggle to keep it together amongst them. Most forums I found were mainly the mums, which helped me understand the condition and the struggles they faced, but sometimes you need a guy to speak to, to appreciate the turmoil and pain you’re suffering, yet still trying to be strong outside for your family. I’ve got great mates, but until you’re in the middle of something like this you don’t appreciate just how hard it is, and what it does to you, so they couldn’t really relate.
This changed me from who I was. I hit rock bottom thinking we would lose our daughter and that I would have let her down as her father by not protecting her. In my mind, as men, we protect, but how can we protect against this, I was fighting an impossible fight…
Then the outlook started to improve for Ava, she avoided heart surgery, we made the tough decision to do the Ladds, and we started to work towards what life was like living with a complex condition.
I became a Trustee and Treasurer for the Heartline Families charity in the UK to help save them from collapse, and help others out as a way to focus my thoughts. In hospital with Ava we’d seen so many babies and children in worse scenarios, I felt I had to help keep a network going for them. In hindsight, it didn’t help us as was more pressure on me, but has helped provide hope for others.
Over the following years we’ve had ups and downs with lots of emergency hospital check-ups, extra tests, waiting for results, always worrying about Ava and what could happen. My phone is always on in meetings waiting for the call to say she was in big trouble, it wears you down. It came before Christmas and was the worst call I’ve ever had to take, as she collapsed at school and taken off in an ambulance….lucky she turned out ok.
We were always told she had asplenia, and now after that call and further scans they’ve found 4 J (which she named J). She’s now signed off from heart care, her LADDs is still working well, her immunologist now doesn’t want to see her for another 2 years, it feels like we’re coming out the other side, of a very long nightmare.
I find my resilience to anything is lower now, my tolerance of trivial issues has pretty much gone, and I have little patience. Once I’m back into training (I put it on hold as priorities changed) things will get better and hopefully we can start to move on a bit.
I still fear for my daughter now, what does the future mean? I still research, but much less than before, and organisations such as Heterotaxy Connection help massively by bringing us and the latest info together, and help provide a more balanced outlook on what it may all mean. It’s sad but also great to see so many people on the forums now.
We’ve been very lucky with Ava, my wife has been amazing through it all, and although I don’t show it all the time I truly believe she’s amazing for being her, and thank her from the bottom of my heart for her support. I hope I’m a good dad to Ava, I want to protect her more than ever, but know there is still so much unknown with her.
We now have Alfie as well, just turned 3, and that journey through pregnancy was tough, but luckily he’s a healthy heart with no sign of heterotaxy. His no fear attitude helps balance out the house.
I take my hat off to all the mums out there, us partners go through a lot, but you carry our children through these tough months, and help keep them strong. And to the other dads - stay strong, find us on FB (Heart Dads Support group) if you need to talk.
After the darkest clouds come the brightest rainbows. However, through places like Heterotaxy Connection, Heartline Families and Heart Dads Support, hopefully those clouds aren’t as dark for people now.
Thank you for taking the time to read my open and honest thoughts, and how this journey has been for me.
Darren Pickard
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