Zachery’s Story, by “Noel and Lorraine”
<Noel>
Today, we are all gathered together for this mass to pray for the sanctity of life. When we were first approached to share with you our story about Zach, our son, we were a bit apprehensive, Nonetheless, Lorraine and I decided to do this, as we strongly believe that children are gifts from God.
With that, we would like to share our story -
Lorraine was pregnant with our second child, and went for her routine check up just like any other pregnant woman. In her 4th month, our gynae was a little worried – he said that our baby had an abnormal looking head shape. As he said that these cases were rare – he referred us to the Ante Natal Diagnostics Centre at NUH. There, we were told that it was too early to tell if our little baby was alright – whether he was normal. The doctor first said that he could have a “variant shaped” head, but to be sure he asked Lorraine to return for a check up around the 23rd week or so.
<Lorraine>
I remember that day vividly – It was Maundy Thursday, 2001; I went for my check up hoping for the best. The doctors scanned me for over 2 hours. I was hardly prepared for what they had to tell me. The scans showed many abnormalities. Our baby had fused skulls, bulging eyeballs, a retruded mid face, plus mitten fingers. He also looked like he had extra toes on his feet. BUT the doctors could not really confirm what he suffered from. Different doctors scanned me, and finally one of the doctors said that he had Carpenters Syndrome. The doctors could not tell us what to expect or how serious his condition was – they could not confirm if he would be able to walk, if he would be brain damaged or mentally disabled, or whether he would be mildly affected.
As we were supposed to leave for a holiday on Holy Saturday, the doctors only had one main concern – Did we want to terminate the pregnancy – because if we wanted to, we had to get it done quickly as otherwise, I would have passed the legal limit.
All sorts of raced through my mind – but my immediate reaction was – no, we are Catholics, and we cannot abort this child. Nonetheless, I cried as I drove home – not knowing what to do or what to expect – I kept hoping that it was a bad dream and that I would awake from it.
<Noel>
I was stunned when I called Lorraine to find out about the check up. She was crying so much that I had difficulty understanding her. I tried to be the brave one and kept reassuring her that everything would be ok.
We kept praying that the doctors made a mistake, that they read the scans wrongly, that somehow our little boy was normal. We decided to go off for our trip to Perth. There we decided to seek a second opinion – We were still hopeful that things would be different.
However…. the results were the same – the doctors agreed that the scans revealed a lot of “abnormalities” – the Australian doctors agreed that our child could have Carpenter’s syndrome, which is a genetic defect, affecting the cranial facial development of the child. He would require long-term medical treatment and numerous surgeries throughout his lifetime. It was a rare condition.
<Lorraine>
It was just too much for us to accept. We thought that if we prayed fervently, God would answer our prayers, and make him normal. Both Emmanuel and I were scared, and worried and confused. The thought of going for an abortion crossed our minds many times. Why not ignore all the moral issues, and just abort – it was an easier and safer option. Then, we could just carry on with our lives and not have to deal with such a child.
Emmanuel and I discussed the issues and how we felt. We made a decision to continue. What kept us going – the faith that if God wanted to give us such a child, he will also give us the means and the strength to go through with the pregnancy, and he will be there for us as we raise our little boy. We decided then to call him Zachary – remembered by God.
<Noel>
Between the 6th month and the birth, Lorraine had to undergo numerous check ups, almost every week – as the doctors had to monitor Zach very closely. We went from doctor to doctor, to see various specialists who dealt with cranial facial conditions. From Carpenter’s syndrome, they diagnosed his as Pfifer’s and finally Apert’s. We came to the Novena to pray to our Mother Mary and asked her to make Zach normal, or if not, to give us the strength to have the baby, love him and care for him.
Looking back, we are sure that one of the main things that kept us going was our faith and our prayers, and of course the prayers and encouragement from everyone around us.
<Lorraine>
The day came to deliver Zach by C-section. I went through an epidural c-section as I wanted to be awake for Zach’s birth. Even the night before, I remember praying to God and our dear Mother – “Please make Zach normal.”
Emmanuel was with me in the delivery room. By then, we had all the other doctors (the brain surgeon, the plastics surgeon) already on stand by in case Zach needed emergency operation. It was very strange – although I was a nervous wreck quite often before the delivery, I somehow felt a strange inner peace as I gave birth to Zach. I asked Emmanuel, at the time of delivery, whether he was normal, and he said “yes” – he has five fingers and toes – he said. Before I could get a good look at Zach, they took him to the ICU and then to the High Dependency to monitor him and run a series of checks.
As soon as I recovered from the effects of the epidural, I went to see my special child. My heart just melted as I held him in my arms. He was breathing heavily, noisily – he looked different – he had a protruding forehead, and bulging eyes, his skull was oddly shaped, his fingers and toes were fused. One elbow was fused. Even in spite of these, although I was scared, as I held Zach closely, and he slept soundly in my arms, I somehow knew that we had done the right thing. Zach was our precious little boy. I remember someone saying, “Only special parents are chosen for such kids”.
<Noel>
Our only concern was how much suffering would he have to go through, and how will he cope? We were scared and worried, but we knew that God would show us the way.
Since his birth, Zach has come a long way – he has had 4 major operations, 2 for his skull, and another 2 to separate his fused fingers. The doctors looking after Zach has said that he has a long way to go until he turns 18. He will require multiple surgeries, as babies with Apert’s syndrome require long term medical care.
Although we were worried – Because of the love around us and the amount of love showered Zach, we have managed to come this far. We have tremendous and loving support from everyone around us. Our parents, Jordan, our daughter, our relatives and friends – everyone who knew us, or even people who did not know us, but got to know us accepted Zach with open arms and with lots of love – No one had negative thoughts or words – and people felt that he was simply a cute little baby.
<Lorraine>
Zach is definitely a blessing – through him we got to really experience love, love of God, our parents, relatives, and friends, and the goodness of people. We are learning to trust in God without questioning, and just believe that He will be there for us each step of the way.
God has indeed been with Zach. He is such a lovely beautiful child. He is always smiling and happy. He has been through so much – but it is amazing how he takes everything as part of life – Zach is a resilient child and has always been blessed with speedy recoveries.
<Noel>
Just looking at him, it is hard to believe that he has been through so much. If we had made the decision to abort Zach, it would have been OUR loss. We would not have had the chance to look after and love this sweet and loving cheeky little boy. He remains a source of hope and inspiration to a lot of people around him, and we believe that he is part of God’s plan. God will never give you a cross, which you cannot carry.
Although we feel pain for Zach as we see him go through his surgeries, he always amazes us with his attitude and his zest for life. We can truly say that we have no regrets whatsoever in making that decision to have Zach. He is our child, and a gift from God, which we love deeply.
