Ashley’s story

I have six beautiful children who I love and treasure and each of them has their own unique story. Ashley’s story is the one that has affected my life most profoundly and for this reason I would like to share it with you.

In early 2003 I was drastically under weight, suffering from nerve damage to my ears and post traumatic stress disorder, all the aftermath of the terrorist attack on Bali that my husband and I were caught up in in October 2002. Physically it couldn’t have been a worse time for my body to conceive a child but against the odds that’s exactly what happened. Even more amazingly, on valentines day during my first routine ultrasound, we discovered we had not one but two little jelly beans on board! We were overjoyed and I felt this pregnancy was a beautiful example of the circle of life. So many poor souls lost their lives as a result of the bombings but here were two little souls coming into the world because of it.

My pregnancy progressed well until I was 24 weeks pregnant. A scan showed that one of my twins was starting to grow larger than the other. Doctors suspected twin to twin transfusion a condition that occurs with identical twins where one takes more nutrients than the other. They told me that they would try to keep the pregnant going as long as they could but it was highly likely they would have to deliver me early. Little did we know how early that would be.

Two days later, as my pregnancy reached 25 weeks, contractions started and I was rushed to hospital. I was given medication to try and stop labour but the following morning I had an adverse reaction to the medication. My heart rate soared, I began convulsing and my husband was told that they would have to deliver the twins or he would lose all three of us.

Our beautiful girls were delivered by emergency caesarean. Ashley first, weighing 680 grams followed one minute later by Carys, weighing 730 grams. They were both whisked away to NICU and Steve and I were left in the delivery suite. It was such a dreadful feeling. No babies to kiss and welcome into the world, no photos to be taken, no bonding as a family. Just emptiness.

When I was allowed to be taken down to the NICU hours later one of the doctors parked my wheelchair between the two incubators that held my girls and said “I’d go home and try again if I were you. There’s a bit of a chance for that one (Carys) but nothing for that one (Ashley)”. I remember sitting crying as he seemed completely oblivious to the cruelty of his words. I felt that I had failed my girls in the most basic of ways. I wanted them back inside me to continue growing together, I wanted another chance to nurture them until they were ready to come into the world and breathe for themselves. They were so fragile. Their eyelids were still sealed, their skin was translucent with veins and organs visible beneath. My heart hurt so badly for these two little angels that I felt like someone had reached into my chest and ripped it out.

The next day came the news that both girls had had level 1 brain haemorhages. Staff reassured us that these may result in minimal or no damage to brain function. The next day Ashley had a grade 4 bleed, the worst you can sustain. Scans showed us that approximately a quarter of her brain had been destroyed. We were told it was unlikely that she would survive, that even of she did she would be a complete vegetable and once again the insensitive doctor told us that we should turn the life support off because “you wouldn’t want to take a child like that home”. As debased as we were Steve and I agreed there would be no turning the life support off. If she made it and she was a vegetable then she would be our vegetable and we would live her regardless.

She lived. She lived through hydrocephalus, three brain surgeries, eye surgery and meningitis. With each surgery they told us she would lose more brain function. Finally five and a half months later, on my birthday I arrived at the hospital and saw all the nurses gathered in front of Ashley’s cot. They all started grinning at me and said “happy birthday mummy”. They stepped aside and there was Ashley, dressed in her going home clothes with no tape on her face, no tubes or wires attached and I cried tears of pure joy because it was the first time I had seen her face properly. Finally my girls were coming home. We had beaten the odds and both had survived. We didn’t know what the future held with regard disability and we didn’t care. Ashley was going home to be surrounded with love from her family and she would have the most beautiful and meaningful life we could provide for her.

I’m taking the liberty here of skipping over the years in between that were filled with therapy, challenges and trials all of which would take too long to go into. Ashley and Carys are now 8 years old. My little ‘vegetable’ attends main stream school and has a diagnosis of mild to moderate Cerebral Palsy. She is not affected mentally apart from a couple of glitches with learning to read. She is a beautiful, vibrant, funny and loving little girl. She brings joy into the lives of all who know her. I believe she has come into this world to change people’s attitude toward disability. She has a wicked sense of humor and lives her life to the full. I am grateful every day for all my children but especially so for my Ashley who was given less than 5% chance of survival. She enriches my life beyond measure and teaches me not to take anything for granted. She is my blessing!