Mildred Chan – Living with a Heart Defect to only find out that it was a different heart defect when she was an adult

Wrote by Mildred Chan

My name is Mildred and I turned 32 not too long ago. For me, it seems like life is starting all over again. I just came out of hospital after an operation (October 2010) to correct the defect that I had been living with all my life.

My Mum contracted German measles when she was expecting me. Back then in those days, there wasn’t such sophisticated equipment to determine how the foetus would be affected by the virus. My Mum told me that her gynae showed her pictures of babies born to mothers with German measles – blind, limbless and all sorts of other physical and mental deformities. All that in the bid to scare the life and hell out of her into terminating the pregnancy. That was 5 months into gestation.

My parents walked away and sought a second opinion of a more senior gynae. His advice was to keep the foetus and hope for the best, even if it didn’t turn out right, they can still try for another. And with that, I was born :)

My Mum never got to hold me in the days after I was born. It pained her to see me connected to tubes, machines, etc and she had no idea whether I was going to breathe my last. The miracle, however, was that I was perfectly formed – except for my heart. There was an abnormally loud murmur but the medical team didn’t dare operate on me back then because they weren’t able to assess what exactly it was and how they could have done it.

I had a fantastic childhood, nonetheless. I couldn’t keep still. In fact, it pained my parents each time I cried because I wasn’t able to play with other children in the playground for fear of the fact that my heart would act up. By then, I was seeing a paediatric cardiologist who determined that I had Pulmonary Stenosis and it was a condition I coud live with. So yayy! My parents got him to write a letter certifying that it was OK for me to run around with other children and run around I did.

As I grew up through school, I took part in many activities. I knew I had a heart condition but nothing stopped me even though I became breathless easily and kept having to take deep breaths every so often. I kept telling myself that was because I have a life and I shall go on living and living it well.

I attended the gym and totally enjoyed group exercises. I hiked the Lake District, the Dales, etc and enjoyed all that Nature had to offer. I travelled a lot and travelling is now my paid job :)

That is until three years ago when my cardiologist sat me down. She showed me my ECHO results and gave me a stern warning to slow down. It wasn’t so much Pulmonary Stenosis. Instead, it was then that she explained that it was a right ventricular mid-chamber obstruction on the right side of the heart and it’s something very rare. At rest, the peak gradient was over 60mm Hg and when put on the treadmill, the gradient peaked at 115mm Hg. Simply put, if I didn’t get anythiing done, just as it had progressively become worse over the years, it will get worse and I was subjecting myself to potential heart failure or sudden cardiac death because the heart has been working too damn hard and that it will just give up. Also, I would never be able to carry a pregnancy through because the heart will not be able to cope with the stress of beating for two.

The only way was to go for an operation to correct this defect. I was not ready and I was angry. My life was as normal as could be but I could not shake off this congenital heart defect however normal I made my life out to be. I asked for alternatives, including taking beta-blockers to slow down the heart so that it wouldn’t have to work so hard but it was just a temporary solution.

I underwent an angiogram which basically confirmed without a shadow of a doubt that I needed surgery. The results were bad because at rest, the peak gradient was hovering at 70mm Hg and my cardiologist didn’t even have to pump in any chemicals to work the heart because it already was working too hard. I played out all sorts of ‘worst case scenarios’, that I would die on the operating table, I will lose my cognitive abilities, etc. Three years, that is how long it took me to say ‘yes’ to the operation.

In October 2010, I underwent something that changed my life. The cardiothoracic surgeon told me that I was making progress better than expected. The only scare factor was that my blood pressure, after the operation went dangerously low whereby I nearly had a stroke (imagine what my parents went through in the hour after the surgery had ended!). I was in intensive for less than 24 hours and moved to the high dependency ward. Before I knew it, I was in the regular ward.

By then, I was walking around the ward, annoying the nurses because I kept asking when I was going to be discharged :p My cardiologist came by and did an ECHO. At rest, my the peak gradient was 20mm Hg. ‘Hurray!’ She said. I was good to go home – just the news I needed to hear.

Recovery was a little dreary because I was limited to the things I could do and I was tired all the time. It also didn’t help that I had broken out in rashes all over the body. I was a little frustrated and unhappy about how those 8 weeks were going by.

Nonetheless, I had the opportunity to do some reflection about the entire experience. There must be something in life that I need to do/accomplish and therefore, my Creator has given me the opportunity to live again, and to live it fully without worrying or being limited by my heart condition.

I now want to tell everyone that I am so thankful that I had 32 years of fantastic life and NOW I am looking forward to the next 32 years of more fantastic and wonderful things to come.

To all of you who have, or know of someone who has a congenital heart defect, take heart (pun intended ;p) in the fact that no matter what the condition/defect is, life is worth celebrating. Even if a life is shortened, albeit untimely, know that there is triumph and victory as long as we spread the word and share with others about our experiences. This is so that we can support others, provide an insight to those who are able to help and hopefully enable medical science to make progress in researching and developing ways of assessing and treating congenital heart diseases.

I am not sure if this is the medication but I now have a fantasy of running the London Marathon dressed as a battery!

Thank you so much for putting up with this lengthy post.

I wish you not just life, but life to years and good health and cheer to all around you :)

My best to you

Mildred

Wrote by Mildred Chan
November 2010

Mildred Chan has kindly given CHD-UK permission to use her photographs