My last few days before my nightmare started were spent at my favourite place – the beach!
It’s been almost 18 months since I was delivered the news….”you have a bicuspid aortic valve and a dilated aorta!”……say what!
I was in the third trimester of my 3rd pregnancy when I started experiencing heart palpitations. I remember watching television one night and I said to my husband that I felt nervous like I was about to present a speech to a thousand people! A couple of nights later, I went to bed only to be disturbed by the loud thumping of my heart, to the point where I thought it was going to jump out of my chest! I had a routine appointment that week with my GP who noticed I had an irregular heart beat. I explained to him the episodes I’d been having so I was put on an EEG machine to monitor my heart rate. Nothing serious showed as did nothing serious show in my bloods. I was told to take it easy and come back if anything got worse!
Heart palpitations can be something pregnant women experience so at the time my GP said it could just be pregnancy related. I continued having palpitation episodes so when I went for my 36 week check up at the Mater, my GP wrote a note about what I’d been experiencing. I saw a really lovely obstetrician that day who thankfully was thorough. She agreed that the heart palpitations were probably pregnancy related, but because I’d had two other pregnancies with no signs of them, they wanted to be cautious and run some routine tests.
This involved having an echocardiograph (heart scan) and I had to wear a heart monitor for 24 hours to monitor my heart’s activity! Nothing significant showed up on the heart monitor, but my echo results were a different story! I didn’t have a gut feeling something was wrong, I went in thinking everything was going to be fine. My sister came with me that day. Mum and dad were on holidays and Kane had to work. This day was the beginning of a whirlwind of events……!
The doctor went through my results with me and explained my echo had showed that I had a bicuspid aortic valve when normally it’s tricuspid and my aorta was dilated 4.5cm, 5cm being severe! At first I was shocked that the results weren’t normal like I thought, then there were a million questions running through my mind? What does this mean? How serious is it? Will I be ok? Will my baby be ok?
That day was spent seeing a few different doctors and I was left with differing opinions. One doctor was happy for me to have a normal delivery, but my cardiologist preferred that I have a c-section because this being a rare condition in females meant there wasn’t enough research to support either way! I was told to go away and think about it for a couple of days and come back for a round table discussion with a heap of different doctors in the coming days….what else could I think about now???
I was due to go down the coast for a few days with my beautiful family and nothing was stopping me from doing that! This would be our last family holiday as a family of four and I needed the R n R! The weather was bliss! The kids were having a ball and I was like a beached whale! I wasn’t too stressed over my heart as I knew I was being looked after by the best and they wouldn’t have let me leave the hospital if I was going to cark it on the spot….and then the phone call that changed everything!!!!!
I will never forget this moment as long as I live! One of my obstetricians rang to say they wanted me to consent to a c-section over the phone incase I went into labour over the weekend and the staff needed to assist my case wouldn’t be on! I was hearing words like: aortic valve rupture, mortality, danger, risk, unknown….what the?? I got off the phone and was a mess to say the least! I couldn’t speak. Mum and dad were with me as Kane was meeting us after work. They kept asking what was wrong and I just couldn’t stop crying…the reality of the cards I’d been dealt had finally sunk in!
I wasn’t prepared to make any decisions; one without my husband and two without the advice of the doctors from the meeting that was going to be held! My sister, who is in the medical field, did a heap of research for me and the risks of having a baby via a natural birth or c-section were similar, but again nothing was very conclusive because this condition is more dominant in males. I was left guttered and confused!
Kane and I decided to finish our family holiday and wait to make a decision until after I’d met with all the medical professions involved! I remember the day of the meeting and walking up the Mater Hospital hill feeling sick to my stomach! I walked into the conference room to a round table of various people. The head of the Mater obstetrics started the meeting and I remember sitting there looking around, listening to what was being said and thinking I can’t believe this….these things don’t happen to me, I watch tv shows like Grey’s Anatomy and Private Practice where these things happen, but I can’t believe this is actually happening to me! It really was a surreal moment in time!
I left that meeting with a plan. The plan was that I was able to have a natural birth, but had to be induced two days later, which meant hooked up to machines, they wanted me to have an epidural and an assisted delivery….everything I didn’t want. But even though this wasn’t how I wanted to birth my last baby, what was most important was that my baby and I were as safe as possible. And safe I did feel. When I was admitted to hospital, I never once felt unsafe. I knew that all the top cardiologists in Brisbane knew about my case and were on call if anything were to happen. Between all the doctors and nurses I could not have felt more safe.
The day of Mia’s birth was long and tough. I was hoping when my induction started and my waters were broken my body, who’d been there and done that before, would remember and go into overdrive and things would happen quickly….no such luck! I spent a lot of time sitting around and waiting for things to happen that day. I can’t believe I was getting excited every time I felt pain. I kept telling myself every bit of pain got me closer to meeting my baby. I had so many different doctors coming in and going over the same questions as the doctor before – everyone wanted their finger in the pie that day. For the first part of my labour my heart rate and blood pressure were good. My midwife was under strict instructions to let my doctor know if my heart rate and blood pressure went past 100. Once my labour started to progress I went and stood in the shower as the hot water was acting as pain relief….this is how I birthed Sienna so was hoping to do the same, but my heart rate went up past 100 so after that I was confined to the bed….grrrrr!
By 3.30 that afternoon I was finally in established labour and 4 hours later without an epidural and an assisted delivery my beautiful little baby, Mia Natalie Trew entered this world. I was stoked that I did it and a piece to this puzzle was complete. Things didn’t go exactly to plan, but pretty close and my heart handled the whole event! There was talk that after I had Mia I would have to go to ICU or the Coronary Care Unit to be monitored for the first 24 hours, but the hospital allowed me to stay with my baby in birth suite overnight, where I had my own nurse who monitored me. I was admitted to hospital on Wednesday and discharged on Sunday….my longest hospital stay, so I was so happy to go home. I had mixed emotions this time. I remember getting home and my dad came over and I just fell into to his arms crying. Poor man I don’t think he knew what hit him. The reality of everything was really hitting home. I was so grateful to be ok and to have a perfect little baby, but I was always going to be left with a heart condition after it was all over!
The next three months were crucial for my condition. I had to keep a diary of my blood pressure and heart rate readings and alert the hospital if I had any chest pains. I tried not to think about it too much as it was doing my head in! It was nice to go back and speak to my cardiologist at my 3 month check up. When I was first diagnosed with my heart condition, all that was important was getting Mia out so we were both safe. Questions about my heart and what had to happen to fix it couldn’t be answered until after I had her and I waited out the 3 month period! The next step was an MRI. This test was crucial to my treatment plan. I was stoked after getting the MRI results back. It showed that I do have a dilated aorta but my heart has a tricuspid aortic valve and not a bicuspid one like the echo showed!
My cardiologist explained that an echo isn’t as accurate as an MRI so I was granted with best case scenario news!!! This means that instead of looking down the barrel of open heart surgery now, I can be closely monitored with yearly echoes and regular blood pressure readings. The thought of having such a major operation with three small children was so overwhelming. I also have to live a stress free life….mmmm ok….I certainly will try! Thankfully since the day I was diagnosed, my blood pressure has consistently stayed around 90/60 and by losing weight and keeping fit this will contribute to keeping my blood pressure down, which is the key to my aorta dilating any further or not.
This whole experience has been very surreal, but I have learnt so much as well! I appreciate the smallest of things in life now and appreciate everyday I am on this earth being a mum, wife, sister granddaughter, niece and friend. I take time out for myself and don’t feel guilty for it. I look at my baby Mia and thank God everyday she was conceived, because if I didn’t fall pregnant I wouldn’t have found out about my heart until it was possibly too late! If I can give any advice from all of this, it would be to listen and pay attention to your bodies! If there is something that you are unsure of and you know it doesn’t seem right, get it checked out. Life is far too precious and when it comes to your life, you can never be to careful!