The 17th of July is always a very special day for our Family. It is my Dad’s and his Twins birthday so it's meant to be a day of celebration. But in the 80’s, dad lost a best friend, and I almost lost my life on his birthday.
I am going to take you back to 1985 when I was 10 years old. I don't remember all of it, just bits and pieces, together what I have since been told.
I had just become a big sister. After being an only child and grandchild on both sides of the family for 10 years, my brother Tom was born in February. I was so excited to be a BIG sister and my parents were thrilled as well because it hadn't been an easy journey for them as I was born with a congenital heart condition called Truncus arteriosus. They had been told I was not expected to live, and unfortunately my Mum had two ectopic pregnancies and was told she couldn't have any more children. So you can imagine my brother was a real blessing, and he brought a lot of joy to our little family.
Our world almost got turned upside down when I started to show signs of being seriously unwell and my parents were told I needed heart surgery. To be honest I don't remember much. I remember some moments, like the horrible body wash they made use before surgery, hushed voices, and I remember meeting the very kind man that wrote me letters and Christmas cards that was my surgeon Sir Brian Gerald Barratt-Boyes KBE. The rest is a bit of a blur. But I have been told that the gallery was completely full for this surgery, like my surgery in 1975. I have since met the doctor and nurse that remember seeing my operation as they were performing surgery. One surgeon has later told me they gave me a tiny 1% survival rate at that time, and that they thought I would never live to see my teenage years.
My 2nd open heart surgery
17th July 1985 I had my second open heart surgery. Apparently it had been tricky but my parents were told I was in ICU and doing well. Until suddenly I was rushed back into surgery as all the stitches ruptured, and my heart was failing. It was touch and go for quite some time and they almost lost me, but as anyone that has met me knows, I don't give up very easily.
I don't remember much apart from waking up in ICU, being back on the ward and being in a lot of pain. I felt really sick, but everyone was so kind. My Mum always seemed to be there holding my hand, brushing my hair or reading to me and my little bother Tom had his own hospital cot and was alway with me.
I remember meeting with the doctor afterwards and my mum asking all these questions: how the surgery went, if I would need another one, if I would I be able to have children… They weren't sure about more surgeries, as they just didn't know if anything more could be done for me. But they were hopeful that I could live a few good years. On having children they said we shouldn’t worry: I wouldn’t live long enough.
I overcame the odds and became a parent
I can only imagine how that must have been for my parents… Especially now I am too a parent to 3 children, that I thought I would never have. And having a son, Rossi, whom is now 14 and over 6ft tall, who was also born with a congenital heart condition. He needed heart surgery as a baby and again when he was 11 years old. It absolutely broke my heart to watch him go through what I did as a child. I still have nightmares about him not waking up after surgery, and I will never forget placing him on the operating table telling me I loved him and kissing him goodbye. I was given so much more information and was allowed to see Rossi more than my my mom was able to see me.
I have so much empathy for what my parents went through with me and I am so grateful for all the love, support they gave me when I know that underneath, they must of being falling a part like I was with Rossi.
Celebrating, remembering and honouring
On July 17th this year I will be celebrating my Dads and Peter’s 74th birthday with both of them as Peter will be over from Melbourne, and I will be reflecting on the gift of life that was given to me 37 years ago.
It is truly amazing that the graft made from a Pig valve has lasted me 37 years. In 2010 I had what is called a melody craft placed inside the existing graft that was meant to give me a few extra years to figure out what they could do with me next. As my cardiologist pointed out, I seem to like to hold onto my valves and not reject them. I strongly believe that my positive mindset and having my mum by my side telling not to give up, is partly why I am here today. And not to forget about all those surgeons, doctors, and nurses that went above and beyond, sacrificing their own personal family time, so that I would have time with my family to create cherished memories and live a rich and filled life.
I would like to acknowledge those that I know haven't been as lucky as I have, and have passed away as TA wasn't as kind to them as it was to me. This year I lost a Richard, he was a few years younger than me. Richard: You’re greatly missed. Your passing was hard to bear as it’s just a little too close to home, now leaving me the oldest person on this side of the world. Not many of us survived those early years, the technology just wasn't available, and even now the out come for TA isn't always survivable.
The last 37 years haven't always been easy. I have struggled to overcome so much… At times excelling, and at other times hitting rock bottom. I struggled through school as I found learning hard. I missed a lot of school due to being sick and I clearly had learning difficulties which just were not understood like they are now. I struggled with PTSD and anxiety my whole life but i just didn't know about those things until my forties.
Me not knowing about these things led to some unwise choices. I spent a lot of my twenties overseas, travelling, drinking and partying too much, scared of my own shadow, scared I would die. To the outside world I would have looked very happy. But inside, I was really lonely, pretending to be this fun party girl, but actually being really unhappy, lost, and without self worth.
I think my lack of self worth led to my choice of, my now ex-husband, but I will be forever grateful for my 3 beautiful children that I love and cherished more than I have words for.
I always longed to have children, but was always told it would be too much for my heart to handle. The risks were too great for myself and my babies. So when I did decide to have children, my pregnancies were very difficult, very stressful, and very closely monitored. All of my 3 babies were premature. My children are my driving focus now, I know if I didn't have them, there would be times and days in my life where I just wouldn’t have gotten out of bed.
What my heart has told me
My heart has taught me that everything comes from my heart. I have a choice in how I use what I feel. I can let the fact that I am exhausted, that life is hard, that I could die tomorrow, push me around... Or I can embrace the richness and rawness of life and run with it. I can chose to learn from my messy past when I was in survival mode. I can learn to have self acceptance, self compassion and make a commitment to myself and those I love, that I will continue to nurture my mind, body and soul so I can be present for them, so we can continue to make cherished memories together.
I feel full of gratefulness for the richness and fullness of my life, for those that I continue to share my life with. And for those I have lost… Mum I miss you more than words could ever describe but I will honour your memory with the Brain garden trust like we talked about. I will borrow some of your strength when I need it and together we will help other families have better access to much needed mental health service.
