Born a Miracle Baby with a Happy Heart I’m Thankful to Turn 25

25 years ago to the date, my Mum was pushing hard to squeeze out a chubby bubby who had decided to hibernate in her belly for an extra week. At exactly 6:55am on this day, a cheeky 9lb 6oz baby entered the world; me! Since then, though I see myself as perfectly normal, many people have called me a miracle baby. Whilst we should be thankful everyday, not just on Thanksgiving, on my 25th birthday today I am especially thankful that I am alive, healthy and loving living life to the max. This is the story of my “miracle” life.

Not long after I was born, my Mum who was a nurse, noticed there was something not quite right with me (other than my killer good looks at only 2 hours old). In the medical world there is a term called blue baby which means the infant has a bluish colouration of the skin as a result of cyanosis (deoxygenated blood), in my case it was caused by complex congenital heart defects. Mum picked up on this right away and freaked, as you would. A few hours later and I was transferred to a different hospital which would be the start of countless hospital visits.

The doctors investigated further and found my body was pretty darn interesting. I had situs inversus with dextrocardia, double outlet right ventricle, subpulmonary and pulmonary stenosis, muscular and membrane VSD’s (including patent ductus arterious), and my liver and spleen had played musical chairs and switched positions. It all sounds rather serious but really just means that my heart is like a mirror image; on the wrong side and back-to-front, a narrowing of my pulmonary valve at the entrance to the pulmonary artery, and my aorta and pulmonary artery were coming out of my right ventricle, I had 3 holes between the right and left ventricle and the blood vessel between aorta and pulmonary artery didnt close at birth. Minor plumbing problems.

The doctor thought it was a “well balanced arrangement and that no immediate intervention would be necessary.” I guess being a Back-To-Front, Raggy Doll is a “well balanced arrangement,” though it really freaked my parents out. The first thing they could think of was what bank they should rob to pay for all my medical bills that they were about to get stuck with for the next 20 years. Thankfully I was born in Australia, and there was no need for my parents to rob anyone.

Over the next few months, on a regular basis, I continued to charm the doctors with my enchanting good looks at appointments, while scaring my mum silly with episodes of relative pallor (turning pale then lying still and staying blank for about 2 minutes). My first cardiac catheterisation was performed when I was just a wee 3 months old; they pop a camera up your groin, into your heart to see what up. Since then I have had many of them, but it was only today I found about this first one.

At 6 months old I had closed heart surgery, a shunt, to give temporary relief from cyanosis while I wait for the full-blown open heart surgery (they enter through your back). Flash forward a couple of years and I am in my prime, fairy parties, sucking my thumb, learning Miss Mary Mack and ready for another tune up. This time the doctors decided to go all out and give me full open heart surgery. They preformed a Rastelli procedure; replaced my pulmonary valve with a homograft and conduit, patched my holes over, rerouted my Aorta back over to my left ventricle and closed over my Foramen Ovale (the patent ductus which is meant to close at birth). After the surgery I had a paralysed diaphragm and an enlarged liver, with time they healed themselves and I was back to sucking my thumb and playing with Barbies.

Around that age I also had various tests to see why I was getting migraines. Even as young as 4 years old almost once every month I would suffer from migraines that would make me light and sound sensitive, throw up, then pass out for a few hours. To this day we still don’t know the cause of them, though they have gotten better with age; I no longer throw up and I haven’t had one in months.

I continued to visit my cardiologist regularly for check ups and catheters, until I needed my next tune up at aged 12. This time when they cracked me open the surgeons gave me new patches or “tissue” over my VSD’s and they attempted to reverse my heart, it did fit the “correct” way around so I have been left a Raggy Doll. They also replaced a calcified right ventricular pulmonary artery with a pulmonary allograft and conduit, some parts were from a pig! Often I wonder if my love of bacon has something to do with partly being a pig. Ironically I did picked up the nickname Piglet as a child, long before I even had this surgery. I was only in hospital for a week, generally children and young adults bounce back after operations. After the surgery the thing that most frustrated me most about being in hospital was that there were so many sweet toddlers in my ward and I wasn’t allowed to pick them up because I was restricted from carrying anything too heavy. However the fridge in my ward had an unlimited supply of mini Breakas (flavoured milk) and I was able to lie in bed and watch The Princess Bride and The Little Rascals everyday, I thought it was like a perfect holiday!

Before my surgery when I was 12 there was a boy at school who told me I was going to die when I had the surgery. His comments didn’t scare me so much as they irritated me. What kind of idiot (abeit he was a teenage boy) thought that I would die during (what I thought) such a simple open heart surgery, and if he was thinking it, how many others were also thinking it? Going through high school, especially during this time, was probably the only time I have ever felt self-conscious about my scars. Now I wear them proudly and could give a rip what anyone thinks. Anybody who has open heart surgery becomes a member of the Universal Zipper Club; we all have a zip scar down our chest. I have been stopped on the street, and have also stopped other ramdon people with zips anywhere and everywhere. We all have an invisible sense of connection with each other.

Continuing to have my check ups, at least once every year with my Cardiologist, he has seen me grow from a chubby blue baby into an independent healthy woman. Fortunately I’ve only ever had to take heart medication for a few years, this year I came off medication for an arrhythmia (an irregular heart beat), some people spend their whole lives on heart medication. At my last appointment in May I received my first 2 year grace period. This is the biggest gap between appointments I have ever been given, so it is an EPIC win for me.

For the longest time I really didn’t understand the full brevity of how different my heart is. Possibly to this day I still don’t entirely know the fully story and I am happy to keep it that way. In writing this blog I had to email my Mum to ask her if she could tell me what I had done and what conditions I have. Tomorrow I am sure I will start to forget some of the details, by choice. I’d always thought that ignorance is bliss; why would I want to know about something if I can’t do anything about it? Furthermore, not fully knowing has allowed me to have no excuse for not doing something. I am so fortunate that my family brought me up to believe that I was as normal as any other child in regards to health. They always encouraged me to play sports even though I am horribly uncoördinated and always came first from the other end in anything competitive.

From the bottom of my heart, I sincerely thank all my amazing doctors and surgeons who have kept me alive, if not for you I literally would not be here today and my parents and brother, for keeping it real and never allowing me to see my heart as a hinderance.

Much to the avail of my cardiologists advice “lead a normal lifestyle” I decided not to follow it, rather I amended it to “lead an extra-normal lifestyle.” Like any other person I can be as fit and healthy as I choose. In the last few years I’ve done triathlons, half-marathons, a Gladiator Rock n’ Run, gone on roller-coasters that have the heart restriction warning, been scuba diving in the Caribbean, jumped out of an aeroplane and off 10 foot cliffs, traveled around the world solo and I’ve only just begun the wild adventures.

Unlike most people who are reading this blog, my heart doesn’t go lub-dub, lub-dub, rather it has a swoosh right in the middle of it. Like my heart, as in life, I swoosh right into the middle of experiences. This year will be my biggest swoosh into adventures yet!

8 thoughts on “Born a Miracle Baby with a Happy Heart I’m Thankful to Turn 25

  1. Thanks for sharing this! That was very cool of you to notice my 28-year-old scar when we met this summer. Few people ask or call it out.
    Happy Birthday from your fellow Zipper Club member!
    Rebecca.

    • Hi Rebecca,

      Thanks for reading this and thanks for the birthday wishes. It was really amazing to meet you this summer, I love meeting fellow zipper club members and you have such an awesome zest for life! Snaps on wearing your scar proud. Sending you health and prosperity.

      NJ

    • Hi Susan,

      First – thanks for reading my story, I’m glad I was able to share it with people. Secondly – thanks for reaching out and connecting. I hope that your son is living a healthy, happy life. You’re blog http://www.momswithheart.com is great! The stress on parents who have a child with CHD is off the scale, so I am sure you are providing comfort for many people. Keep sharing and connecting.

      Nicollé

  2. What an amazing story . Thanks so much for sharing it . My daughter also has CHD . She is 5 months old , and is waiting for her first heart surgery . Your story gave me so much hope .
    marcia

  3. I’ve been diagnosed with VSD when I was 4 years old, but didn’t get surgery before I was 10, because at that time there were only three hospitals in Germany who could perform open heart surgery using cardiopulmonary bypass and the waiting list was long. They gave me a 50% chance of surviving the procedure, but they also told my mom I wouldn’t reach 16 without it.

    My heart’s been broken a couple of times since then, but the ticker is working fine. Apart from a scar all along my sternum, raising eyebrows at the pool, there’s been nothing out of the ordinary. Since I have always low blood pressure, even though I do everything against it (i.e. smoking, fatty foods, alcohol occasionally), I expect to live way past my 90th birthday.
    By the way: I’ve got three kids, all perfectly healthy and left-hearted.

    We really have to be extremely thankful to live in this time. 100 years ago we couldn’t have survived our condition, but medical progress made it possible that people like us can lead a normal life.

    Regarding the situs inversus totalis: I don’t know why God made us the other way around, but I feel like a member of a secret and very elite club.

    Wishing you all the best, dear Nicollé!

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