Kristen is passionate to find the cure to
CHD Childhood Congenital Heart Disease
for all the Children who have lost their battle
and for the Children who battle with it every day.
Shaun Miller Foundation
Ambassador: Kristen May
I was born early on a Saturday morning in June 1967. I was born blue and rushed to the Royal
Children’s Hospital that very same day. My parents were told that I was unlikely to live more
than 24 hours, so they had me Christened in the hospital before the transfer.
They were told I had a serious heart condition. I know my mum was left at Cabrini
while I was moved, and she would not have seen me in the first few days of my life.
I am not sure how long I was in the RCH, but I was in a humidicrib and very unwell.
When I was discharged my parents were told not to take me out much because
even if I caught, just a cold, I could die. As it was my mum had to carry around
specialty equipment which included oxygen everywhere we went.
It must have been very isolating and terrifying for my mum.
My heart condition was diagnosed as Fallot’s Tetralogy and I was told I had so many holes
in my heart, it looked like Swiss cheese! The prognosis was anything but favourable.
Not only were my parents told that I had a heart condition, they were also told
that I had a chromosome abnormality as my fingers and toes were webbed,
this however was only temporary. No one could understand how this disappeared,
but it did, and I do not have a chromosome abnormality any longer.
They were also told that I had no kidneys. I do; however, my left kidney has never
functioned. At two years of age, I had my first surgery, a by-pass. I have a scar from that
which goes around from the right side of my chest around to the back.
This was the first surgery of many. They could not do the open-heart surgery
until I was older, as back then, this usually resulted in death. Years later we
had neighbours who had had a child born with the very same thing on the same day.
I survived, he didn’t. To say I have experienced survivor guilt is an understatement,
I don’t know why I lived, and he didn’t, but I trust God enough to know that He does.
As a family we used to holiday down at Point Lonsdale. It was not long after this first surgery
that my parents were on the beach, some people walked past and noticing
how unwell I looked and asked mum if she knew about praying for healing.
Mum and Dad started going to a “Charismatic” church where they learned about
God’s power to heal. I believe He did heal me as much to survive. I still had to,
and still have to, go through all the medical stuff but I am a miracle,
there is no doubt about it. The church held an all – night prayer vigil the day
before my first open-heart surgery when I was 5. I was in Prep and I was in hospital
for 7 weeks. I remember going under the anaesthetic I had a needle in my hand
and it hurt and I had to count. The thing that was on my face was green
and had black bellows. I was not expected to live through it. This was in 1972.
I, of course, woke up in ICU and have quite a few memories from that, not all were pleasant.
I consistently wet the bed and one nurse yelled at me, day after day.
The psychology of children was not considered important in those days.
I called that nurse Sergeant Pepper. I was also tied to the bed as I kept
scratching my stitches. I have had to receive quite a bit of healing from these
memories. I still react physically if I hear a noise like a light trolley rolling along,
(ECG) I remember I saw a child with major burns screaming as his bandages
were changed, and the day a baby died in my ward. I told my brother one day after
I got out of hospital something that happened while I was in ICU.
He was asking Mum how we know if Jesus is real? I answered,
“He is real, alright, He was with me in the ICU.” I don’t remember it now though
unfortunately. I had many, many visits to hospital, still do, concerning my heart,
and other complications rising form my diagnosis of Fallot’s Tetralogy and I will always
have to see the Cardiologist, pacemaker and Kidney and liver specialist.
I was pretty well until I was about 22 when in Singapore, I felt very faint and was
rushed to hospital. They realised I needed a pacemaker, so when I came back
to Melbourne under much stress and difficulty, I got a pacemaker put in.
I see an amazing doctor, Dr Mond at Cato Cardiology who is wonderful.
I think I am one of his most long-term patients. My lung was punctured
in the first surgery and a routine pacemaker insertion became a little more
complicated. Years later that pacemaker was found to be faulty and I had to undergo
many dangerous surgeries associated with removing the wires. A piece of plastic tubing
went to my lung. Unfortunately, about 6 months later, I had a stroke because the new wire
had gone into my left Ventricle accidentally instead of the right Ventricle.
Blood clots are formed on the wires, and one went up to my brain.
This resulted in another high-risk surgery to put the wire in the place
it was supposed to be in. Although I couldn’t see properly for a week, there have been
no long-term deficits from the stroke except that if I am tired, I mix up my left and right.
I was never much good at Sports, although I tried. I wanted to be considered normal like everybody else and I was yelled at by teachers for not running enough (it hurt all over)
and I still have bluish hands and feet. But I have become a mother,
(long story in itself) a teacher and an actor. I have two beautiful kids.
I have often suffered guilt about them too because they have had to suffer
significantly because I get so sick. My daughter has mental health challenges
partly because of this. Becoming a teacher and actor has been hard at times
as I did have significant deficits socially because of my illness. I was very shy
when I was young. I looked and felt different to the other kids,
treated differently as I couldn’t do everything that everyone else could do,
and always felt like a huge plastic sheet was between me and the rest of the world
that I could never get through. When you feel odd as a kid, you think it’s just you.
I currently work as a Primary Teacher teaching years 3 and 4. I have worked in many childcare
centres, Kindergartens and schools. As an actor I have made short films, been a character actor for department stores and worked professionally on stage and am in
EVERYBODY HURTS the movie to be released in 2023.
I have had two valve replacements, tumours and other conditions.
I have lots of “ologists” as I call them because my body is a bit wacko, but it’s mine,
and I love it! It has kept me alive, I am now in my mid 50’s, pretty good since
I wasn’t supposed to live past a day! Most people who see me have
no idea of what I have dealt with and that is a good thing.
Every life is worth living, and I pray that God uses my life to bless other people.
Throughout it all, God has been with me every step of the way. He is faithful and just
and to be His is the greatest blessing. Has always been and will always be
no matter what I face. I met Cameron when I was asked to do a film
about a young girl committing suicide. The director told me that his son had had CHD
and was amazed when I told her I have it as well. When I told Cam,
he was blown away. As well as the survivor guilt popping its ugly head up,
it made me realise how much my story can also assist others, and how important it is
to let our stories be an inspiration and do some good in the world.
I wish that I could have met Shaun. Like he said, sometimes we do get down,
but we need to live life to its fullest as we never know how long or short it will be.
That is why I am thrilled to be an Ambassador for the Shaun Miller Foundation.
Any light that can be shed on this disease will help others like myself
find a cure, a prevention, and not least of all psychological assistance.
My mum and dad went through so much and my children go through so
much because of this illness. It is time for it to stand up and be taken notice of.