I had always declined ultrasounds with my pregnancies, so had no idea that Joe had a problem. If I had gone ahead with the routine ultrasounds we would have been strongly advised to abort Joe. We would have been told that there was nothing that could be done for him after he was born. Now, that’s definitely not true. There have been many successful surgeries (Joe ‘s has been one of them!) for babies with HLHS. Sadly many of these babies haven’t been given this chance as their parents have listened to and believed this false information and tragically aborted their babies. Even though we were totally unprepared for what was about to happen I had at least had a worry-free pregnancy and no way would I have gone ahead with an abortion if I had known about Joe’s condition. The only plus of an ultrasound would have been having time to prepare ourselves. It was five days after Joe’s birth and there we were rushing out the front door, (not to return for another five months!) with a seriously ill baby, not knowing what was wrong. We went to the Canberra hospital and the next few hours seemed like an eternity waiting for a diagnosis. By the afternoon we knew Joe had a serious congenital heart defect. We had him baptised and confirmed. All I could think was I couldn’t bear to lose another baby as our little girl, Imogen, our 9th child, had been stillborn a few years previously. What followed was rather stressful and traumatic. We had to make a helicopter ride up to Westmead Children’s Hospital in the middle of the night, with an emergency landing at Goulbourn Hospital, to unblock Joe’s breathing tube which had become blocked with blood. We eventually made it safely to Westmead. It wasn’t until later that morning that we were told Joe had HLHS and he had almost died. It was heart-wrenching to see our little boy so seriously ill. We were all overwhelmed, exhausted and trying to make sense of what was happening. We felt so helpless. All we could do was place all our trust in Jesus.
We were also given the option of “compassionate care” which means taking your baby home to die.
The next big hurdle to face was being told that at Westmead they couldn’t do anything for Joe. They also informed us that there had been some success with a three-stage surgery for Joe’s condition at the Royal Children’s Hospital (RCH) in Melbourne. We were also given the option of “compassionate care” which means taking your baby home to die. Well, we weren’t going to let go of Joe that easily. We knew the pain and heartache of losing a baby and we weren’t going to deliberately go through that agony again. Some of the children that undergo the three-stage surgery don’t make it through. At least they are given a chance of life and their short lives are definitely not without purpose. They bring joy and untold blessings to their families and all those who care for them and come to know them. The doctors gave us a very gloomy outlook for Joe’s life if we decided to go ahead with surgery. We thought, “How could we choose death when there was a chance of life?” Even if we lost Joe during the next few months, at least we would know we had done all we could to help him have life. So we chose to make the journey down to the RCH in Melbourne, which would become our home for the next few months. Joe underwent several open-heart surgeries and procedures during that time. Needless to say it was filled with many ups and downs, challenges and victories. We eventually made it home and since then have just tried to make Joe’s life as normal as possible. He had the final stage of the surgery when he was five and has regular checkups at the RCH in Melbourne. It has been an amazing journey. We have been tested in our faith and trust in God. We have seen the power of LOVE that only a family can experience. Yes, we chose LIFE and have been blessed with a beautiful boy who has given us more than he can ever imagine. Thanks be to God. For more information about HLHS or support for families living with complex congenital heart conditions, contact the Hearts of Hope website here.
[This article first appeared on my previous website, Light up the Darkness - Kathy.]