~In The Beginning~

Ben and Veronica with ultra sound pictures of baby Phelicity taken from a magazine article featured in Who Weekly.

We live on the Central Coast of New South Wales. Daddy Ben, Mummy Veronica and the love of our life our first daughter Mahalia now one and a half. March 19 2002 was just an ordinary day for us, we had been to the travel agent in the morning as we were going to go on a holiday to New Zealand before the baby was born. We had lunch with my Mum as we had an ultrasound at 1pm. At 1pm we all marched in for the ultrasound eager to see how our baby was going. We looked in at amazement as our baby sucked her fingers and seemed to be waving at us as if she new her Mummy and Daddy were watching. I noticed that the sonographer was spending a lot of time looking at the babies heart when I questioned her she said that everything was O.K. but that she was having trouble getting a clear picture. She then left the room and came back with the ob/gyn. He looked at the heart then they whispered together he asked that we come into his office with him. As he said this I new that something must be wrong as this never happened with our first daughter Mahalia. He then proceeded to tell us that our baby was perfect then he drew a picture of a normal heart then one the way our baby's was. I asked him what this meant, he said that our baby had Hypoplastic Left Heart Syndrome. I asked again what does this mean he told us that if our baby survived to be born that she would die shortly afterwards. He advised that I have a termination as soon as possible as I was already 19 weeks pregnant, to save my self the pain of carrying a baby that was just going to die anyway. With these words our world was destroyed we had so many hopes and dreams for our child's future and this was not it. I then pleaded with the Dr that there had to be something that could be done as everything these days has a surgical answer. He said that because it was such a serious condition that there was nothing at all that could be done. He advised again that termination was the best answer. This was not something that either of us could do. I asked if we could have a referral to see a specialist so that we could get another opinion, this he did for us. That afternoon we were joined by our family and we all grieved that the baby we longed for was going to die. When my husband and I returned home that night we got on the internet and typed in the condition, we were sure that we were the only ones in the world with it. Before our eyes were many website on the condition and we quickly learned that there was in fact contrary to what our Dr said an operation called the Norwood Operation. We continued to research this procedure shocked that our Dr had not given us this option. We went the next day to see a paediatric cardiologist. He did another ultrasound of her heart in detail and confirmed the diagnosis. We told him that we had found an operation that may save our baby and could he tell us more. He told us that yes the operation was being done at the Royal Children's Hospital in Melbourne, however it was a very difficult procedure and that there was a very high death rate. He also told us that the babies aorta would have to get to a certain size and she would have to have a good birth weight before the doctors there would be able to operate. (Please see note at the bottom of this page) He then said that there were 3 options for us to consider. The first of course was "termination" the second would be "compassionate care" and the last would be to try the three stage Norwood operation, if our baby was born big enough for that.  We left very sad again although this time there was a little bit of hope for us. When we returned home we again got on the internet and continued our research this eventually lead us to Dr Norwood himself who is head of the Nemours cardiac centre in the US. We then found that Dr Mark Galantowicz had modified the Norwood operation so the first stage only involved a Stent in the PDA and bands would be placed around the pulmonary arteries which is quite a minor procedure. This would keep the baby alive till 3months of age at this time he would go in and do the whole procedure in one. We called him that night and he spoke with us for half and hour on the phone explaining at length what he was doing and that he was having a very high success rate and that he would be happy to help us. As we hung up the phone we cried that at last someone was giving us answers. Although now we had two options to stay in Australia or to pack up our whole life and move to the US for the new operation. This had to be a decision that only we could make as we were the ones that had to live with it. Eventually we decided that Dr Galantowicz and the procedure that he was now doing would give our baby the best possible odds. So all we had to do was pay for it. We started immediately trying to raise the money to get us there.