On Friday 28th April we received a telephone call from our Obstetrician who had viewed the ultrasound - he referred us to the Children’s Hospital at Westmead for further scanning. We still weren’t too worried at this stage, and had just started telling everybody we were expecting a little girl. We called on Monday to make an appointment for later in the week - The Cardiologist, Dr Cooper was fully booked however he cancelled another appointment to fit us in on Tuesday. This worried us a little - why the sudden urgency?

On Tuesday 2nd May we took two cars out to Westmead so Andrew could go to a meeting that night and I could go straight home to feed our dogs. This ultrasound seemed to take forever, nearly an hour. I laid there not suspecting a thing. What Dr Cooper had to tell us in the following minutes devastated us. All our hopes and dreams of enjoying the pregnancy and having a healthy baby girl were shattered. He told us that our daughter had a congenital heart disease, which was very serious and also quite rare. The left side of her heart was not growing sufficiently to sustain life after birth. He did not tell us what the condition was called, although through our own research we later found it was HLHS.

We were given two options at the time - to terminate the pregnancy or go to term and have our daughter die shortly after her birth - this was called compassionate care. We might have a few days with her at best. The diagnosis was to be confirmed in two weeks at a follow up appointment where we were expected to have made our decision. We walked out of the room very calmly then it actually hit us. I went totally numb and tears welled up in my eyes then in a sudden outburst I couldn’t stop crying. How could this happen to us? We had done everything right. I was healthy, didn’t drink or smoke. This was going to be our only child. Why her…why Taylor? They must be wrong. My baby wants to live!

"Our first picture of Taylor"

"WORKING THROUGH OUR OPTIONS"

Armed with all this information we questioned Dr Cooper who told us that heart transplantation for babies in Australia was not an option as there were no donors. He admitted there was a three-staged procedure although it was not very successful and he did not recommend it as an option. He stated that babies did not have a very good quality of life after the procedures - and the likelihood of surviving the three surgeries was very low. He further added that he would not have the surgeries performed on his own child. At this point we no longer cared. We wanted to know about the surgical options available to our child and us.

Dr Cooper advised us that there was only one Surgeon in Sydney who was prepared to attempt the first surgery. We made an appointment with him immediately. During our very brief and abrupt meeting with the Surgeon we were given little encouragement. We were also told that during the first procedure (the Norwood) he would need to cut oxygen to the brain, which would increase the chances of damage to the brain. If our daughter survived the surgery she would most certainly have a below average IQ. He also said that he would not elect this option if it were his own child, however if we wished he would perform the surgery. We were not given any hope of survival for our daughter. He followed up by stating that he would be on holidays for weeks 38 and 39 of my pregnancy.

We asked how often he had performed the Norwood procedure to which he responded “twice”. We then asked what his success rate had been - both babies died. He told us that the most critical period for a Norwood baby was immediately post operative and that this care was critical and unique. Given the lack of success in the past we were not left with much confidence in getting even that far. We also asked what would happen if our daughter arrived during weeks 38 or 39, which was highly probable. He had no answer to this question and offered no suggestions or alternatives. We felt we had come so far only to hit a brick wall. We now had a possible surgical option (although the statistics were very grim) yet we would be without a surgeon. Hadn’t we already been through enough without this?

It was the most difficult time of our lives having to make a life or death decision for our unborn daughter. I was so glad that Andrew was as certain as I was that there was no decision to make. We would do everything possible to give our daughter a chance at life. We had made our decision. We so desperately wanted our daughter to undergo the surgery - even given the supposed appalling survival rates and the lack of medical encouragement we were receiving.

During all this confusion and heartache we tried to do things with our dogs. We couldn’t go about our lives as normal. There was no normality to anything anymore. The only real comfort we felt was being with our six Siberian Huskies and our pet Chihuahua. The weekend after we found out about Taylor’s condition was an annual Husky Club fun run, where we enjoyed racing our dogs on rigs in the Belanglo State Forrest. We decided to go in the hope that it might take our minds off things. We weren’t yet strong enough to tell people what was wrong. When I got home on the Sunday night everything hit me like a tonne of bricks and I fell apart. I cried so hard it physically hurt. I felt as if I would never be able to stop crying. I had never cried like that before in my life. The pain I felt was so overwhelming and consuming I felt like I wouldn’t survive what we had ahead of us. I couldn’t deal with preparing for the possible death of our daughter.

Having people congratulate me on the pregnancy and ask how things were going were very difficult times for me. People are so excited to congratulate newly pregnant couples, with jovial comments and smiling faces. We found it very difficult telling people that the pregnancy was not going so well. Nobody really seemed to understand the complexity of the condition, and many people made well-intentioned comments that really hurt without meaning to or even realising. Day to day waiting for my due date I cried a lot. I knew there was nothing I could do. I was very scared about her birth because I knew she could die - I spent most days and nights very depressed.

I could no longer be excited about my pregnancy knowing that there was a very real chance that my baby would not live long enough to see Christmas. My growing tummy was a constant reminder of my baby’s condition and fate. She started kicking for the very first time on the night we found out about her condition. I can’t begin to imagine the joy and excitement that most mums-to-be must feel when they get their first kick. For me it was almost a feeling of resentment and at times I became very depressed. That little girl who was so active in my tummy may never get a chance to walk. I had a very hard time dealing with the fact that Taylor was moving inside me and yet was considered fatally ill.

We had already picked out all the nursery furniture and put it on lay-buy before we found out about Taylor’s condition. I questioned myself about bringing it home. If we were going to be strong and positive for Taylor then I had to set up her room and have everything ready for her to one day come home to. Yet there were so many other things I just could not bring myself to do - child birth classes, buying tiny little baby clothes, talking with other happy pregnant couples, watching baby commercials on TV, listening to advertisements for Mother’s Day, walking down the baby isle at the supermarket…. I cried at just the thought of these things. All my dreams of pregnancy and having a healthy baby were now nightmares. I didn’t want to talk to my nieces on the phone or hug my own nephew through fear that I may never get to do these things with my own daughter. I even envied friends with healthy babies and couldn’t bring myself to be near them