Life story told by Adult living with CHD

 I’m more than happy to share my story with you, I love telling it because it makes me realise how far I’ve come and reminds me to be grateful for every day.
I was born in May 1987 and was my parents second daughter. I was a big baby at 9lb 2oz and seemingly healthy. At my three month check the doctor detected what they initially thought was just a heart murmur but decided to send me up to Exeter for more tests to double check. They soon realised that it was much more than just a heart murmur. They discovered that I had a large VSD (Ventricular Septal Defect), my Pulmonary Artery was severely malformed, I had a PDA (Patent Ductus Arteriosus) and collateral arteries to my lungs. Back then the only way to fix me was a heart and lung transplant but the consultant explained that due to the nature of my arteries the surgery would’ve almost impossible. My parents were told that I wouldn’t see my first birthday. They were devastated to say the least. As the weeks and months passed I remained healthy and soon the months turned into years. I had a good childhood which I felt was as normal as could be. I enjoyed ballet although as I got older I did start to become worn out with physical activities. I had yearly check ups with my consultant, Dr Rob Martin (you may well know him or know of him) who was absolutely amazing and so reassuring for my parents.
Miraculously I was extremely well until I got to the age of nine when I started to notice I was getting more breathless and my lips were going more blue. My haemoglobin had started to drop and so this was when Dr Martin decided it was time to intervene. In the nine years since I was born medical technology had come on leaps and bounds and instead of considering a transplant, they were able to plan a series of operations to fix what I had. I had my first operation in the summer of 1998 at Bristol Children’s Hospital. This was a ‘shunt’ operation, designed to connect arteries to improve blood flow to other arteries allowing them to grow. It was a great success and the whole team were amazing.
From my surgeon, Mr Pawade, to every single nurse that cared for me. Thanks to them I don’t have any bad memories or feel any trauma attached to this time. I actually really enjoyed being in hospital once I’d started to feel better and even remember having water fights with syringes with the nurses in the garden! I had my second ‘shunt’ operation the following summer. As before this was also a great success and I noticed immediate improvement. My third surgery was planned for the following summer. This was to involve open heart surgery where they would close the whole and do some ‘tweaking’ as my consultant put it. It was meant to be my final surgery but when Mr Pawade opened my chest up, he was shocked to see that my blood vessels were completely different to what they had seen through scans. He therefore had to rethink the whole operation then and there while I was on the table. This operation was nine hours long and unfortunately he wasn’t able to do everything he wanted to and could not close the hole. He broke the news to my parents that I would require further surgery to finish what he couldn’t do and eventually close the hole.  This was carried out the following summer and was a success. Throughout my time in hospital, although I remember traumatic moments, my overall feeling is that of happy memories! I only ever remember feeling anxious before my fourth operation, most probably as I was that much older and much more aware of consequences. In amongst having all this surgery, I had also had three blood clots, one in my lung, one in my heart and one in my brain and was subsequently put on warfarin.
Since the age of 14 I have been well and have lived a relatively normal life. Other than a TIA (Transient Ischemic Attack) caused my a small clot in my brain back in 2014 and a keyhole stent fitting in 2018 I have managed to avoid any major surgery. I have regular checks up as I have a very leaky pulmonary valve which will be replaced via keyhole next year, and regular blood tests to keep an eye on my INR. Other than that I am perfectly healthy!
So that’s the story of my heart from when I was born but there is also another part to my story which I think you’ll find extremely heart warming –
During one of my check ups with my consultant when I was around 27, I was asked if I’d thought about having babies. My husband was with me at the time and we both said of course we’d like them but not just yet and asked why he had asked us. He broke the news that my heart defect, although corrected, could seriously affect my chances of carrying a baby. This was a huge blow as I’d never even given this a thought and it was never pointed out to me before. He told us that there was a specialist team of doctors in Bristol that could tell us more and to go see them before we even think about trying to conceive.
Even though we weren’t planning on starting a family just yet, we decided to see these doctors anyway just to get a clearer picture and to hopefully give us time to get our heads around whatever they told us. First we met with a cardiologist who explained everything from my hearts point of view. It was scary listening, three months in hospital, possibility of heart surgery during pregnancy and so on. My husband decided then and there he didn’t want us to risk it. I was still holding onto hope though and was prepared to go through a lengthy hospital admission if needs be. I remember coming home and sitting down with my husband, my parents and my two sisters to let them know what the doctor had said. After listening to e explain, my older sister Ebony took me to one side and said ‘If you can’t have a baby, you know I’d do it for you’. Although this was an AMAZING offer, I almost dismissed it as I was determined my heart was strong enough to do it myself.
We then had an appointment with an obstetrician who explained everything from baby’s point of view. She said the medication I would need for my heart to survive would 100% affect the baby and could even give the baby a heart condition. This was the deciding factor for me. It was one thing if I became ill but to knowingly harm my baby, I just couldn’t do it. Realising this, I spoke to my sister and asked her if she was serious about her offer and to my amazement she absolutely was. She already had two children of her own and knew that having a baby of our own would complete our little family. We started our surrogacy IVF in 2016 but our first round turned out to be unsuccessful. The doctors realised I naturally didn’t produce many eggs and therefore we only managed to get three viable embryos. Two resulted in really early miscarriages and one just didn’t work at all. We were all devastated as you can imagine. We couldn’t afford a second round as this time we wouldn’t have any NHS help. This time it was my younger sister, Ellsie, who came to the rescue and set up a fundraising page. We had decided to swallow our pride and asked for help from friends and family which they were all more than happy to do. As well as the fundraising page we’d also set up some small events. With the money raised plus a small loan from the bank we had enough to go for a second round! Unfortunately this round only produced one viable embryo. We were gutted as we knew we couldn’t go again if that one didn’t work but as my sister said ‘It only takes one!’. She was absolutely right and in November 2017 we had a positive pregnancy test and baby was growing perfectly!
Our beautiful little girl, Rae Ebony Ann, was born on 24th July 2018. We were all absolutely over the moon and to top it off Rae’s heart was perfectly healthy. She is now nearly two and I am forever grateful to my amazing sister for her.
So that’s my story, sorry it’s a bit long but there’s quite a lot to get in there! Thank you for showing an interest, I’ve really enjoyed typing this up ❤