Miracles can happen

This is the story of Christmas 2002 and the birth of our beautiful daughter Emma.  It’s told not to scare off new parents but to bring awareness of Heartkids.

Emma was born on the 20th December.  She was perfect and it was the most awesome moment of my life.  A few hours later we transferred to Birthcare.  After we had been there for a couple of days, Emma’s breathing became laboured and her nostrils were flaring.  Everyone thought that there had been complications from her swallowing too much meconium during birth so we were transferred by ambulance to the neonatal intensive care unit (NICU)

The initial diagnosis was Emma had pulmonary hypertension – a condition where there is raised blood pressure within the blood vessels supplying the lungs.  We kind of went along with everything we were being told and hoped she would soon get better.  It was frustrating though because Emma didn’t like having tubes up her nose and would pull them out.   Eventually they told us they would have to sedate her to try and make some progress.  That’s when I began to get the stomach churning feeling that maybe this wasn’t going to be as straightforward as we first thought.

Emma was transferred to level 3 care at NICU.  She had a heart scan and the notes said that she may either a narrowing of the arteries or a leaky valve but they would rescan later.  So I settled into what was becoming our normal routine – sitting with Emma when we could, reading stories and playing baby Mozart.  I don’t think we realised the danger she was in.

One night we came home from the hospital on a high because we’d had Emma on our knees and given her cuddles.  At 11.30pm that night we received a phone call, saying Emma had deterioted   badly and we had to come right away.   That ride to the hospital was the longest of our lives, I wasn’t sure what to expect when we got there.

Emma was lying in the crib all blotchy and white.  She was suffering from heart failure and her tiny little body had just about shut down.  A priest came and baptised her and read prayers for sick children.  My mum and dad arrived and stood behind us  for our little princess at the bedside, praying for our little princess to get better.

I remember suddenly being the calm one, with my husband Dan, Mum and Dad all crying around me thinking that I couldn’t lose it because I had to be strong for Emma.  I stared at my daughter as they worked to save her and told her “It’s not your turn to be taken from us” She must have been listening.

The medical team worked all night to stabilise her.  By then they knew she had coarctation of the aorta – which is a narrowing of the body’s main artery.  By daylight there were lines coming out of Emma’s head, she had a shunt in her leg to bypass her heart and was on a concoction of drugs.  Emma was transferred to Green Lane hospital for heart surgery.  As soon as she was there, we felt relieved.  It was still tough and go but a least there she had the best chance of surviving.

The surgeon explained how the surgery would work.  They would cut the aorta and remove the narrowing and then join it back together.  There is another part of Emma’s heart on the left hand side that is a bit narrow and her heart is small but they would only operate on the aorta that day.

All the family sat together as surgery progressed and we waited anxiously to hear how she went.  Then we got the news we had been waiting for – the operation was a success.  Emma was transferred to Intensive Care and was allowed to come home on the 10th January 2003.

Since her operation Emma has come on from strength to strength and is regularly monitored by the lovely team at PMH.  It is unlikely that she will need further surgery as so far the aorta is growing as Emma grows.  Emma is now 10 and loves singing, gymnastics, reading, My Kitchen Rules and the Freo Dockers.  Just recently Emma was chosen to be Docker for the Day at the Starlight Purple Haze game and got to run on the field with Matthew Pavlich.

We hope that Emma’s story gives hope to other families, that no matter how bad it gets and it is scary having to watch your child have heart surgery, that they do grow up and do amazing things.

 

Western Australia