The following story was written by a friend and mother of two we both suffered the unthinkable here is her account…
I will never forget the day. The 3rd of March 2003. The day when our world came crushing down around us. A 9 o’clock appointment at the paediatricians to receive the results from the blood test our nearly 17 month old son had recently. Whilst Zachary appeared to be healthy and happy, he had not been achieving his milestones and was still not able to crawl or even talk much.
Zachary had already had a MRI scan and a urine test and so far all appeared normal but never in my wildest dreams did I think the doctor would say, “Zachary has Tay Sachs disease”. Unfortunately I had a vague understanding of this disease as I had been searching the internet for possibilities over the weekend but had dismissed this option immediately as the information stated it was predominantly found in Jewish people.
I remember saying loudly, “Nooooooo!” My husband didn’t know what it was so he was confused, however, I recalled the one fact that made my body go numb with grief. Children with this disease usually die before the age of 5. The odds of this happening were extremely high, something like a million to one. The doctor, clearly not thinking straight, even said “it was like winning the lottery”.
My husband and I came home shell-shocked after the doctor attempted to explain all the technical details and what would happen to Zachary’s body as the disease progressed but we were unable to take most of it in.
Tay Sachs is a genetic disease and as I was 26 weeks pregnant with our second child, there was concern surrounding our unborn child’s health. The week that followed was a blur as we attended appointments with geneticists, genetic counsellors, specialists etc. We were overloaded with so much information, a lot of it being stuff we just didn’t want to know and although they were all kind, it was all so negative which made it all the harder to deal with. The baby was tested and due to the urgency of the situation, the results were rushed through. Thankfully our new baby was healthy which eased the situation but we were still racked with grief knowing we would never see our darling boy grow up.
We went through the whole gamut of emotions, we were angry, really angry, but who could we be angry at, it wasn’t anybody’s fault. We couldn’t help wondering, why did this have to happen to our child, to our beautiful boy? It just wasn’t fair! I remember both my husband and I wanting to shut ourselves away from everyone and everything. But the world kept turning, the sun continued to rise in the morning and set again in the evening. We did a lot of crying and we virtually lived on automatic pilot as we still had this happy little boy who needed to be fed and cared for. Family and friends were all told and most were speechless, not knowing what to say or do. I didn’t blame those who said the wrong thing, I am sure I would have been the same myself if I were in their shoes.
Once we got over the initial shock, we realised we needed to take action. We understood this disease was incurable but that didn’t mean that somewhere in this big world someone wasn’t already working on a cure.
We began to research possible cures on the internet and we contacted several hospitals and universities both in the United Kingdom and the United States. We emailed as many doctors and Professors as we could and although we did not receive positive news, we were grateful they took the time to respond to us and answer some of our enquiries.
I am sure that some of the doctors, nurses and therapists who attended to Zachary must have thought we were either naïve or perhaps completely stupid when it came to our protective nature and our constant fight to find a cure for this disease. We believed if you didn’t have anything positive to say, then we didn’t want you anywhere near our son. We were sick of having to constantly brace ourselves against any negativity as it just did not help the situation. Even though we could see Zachary was slowly regressing, it was important to hold on to hope at all times. Without hope, everything about Zachary’s life seemed pointless; feeding him, caring for him, the sleepless nights, the therapists and the doctor’s appointments would all be a complete waste of time. We had to believe that Zachary would be cured and grow up to live a normal life one day otherwise we wouldn’t have been able to keep going.
As time went on, Zachary started to get seizures and his swallowing was also starting to regress. One night Zach gave us a bad scare and he aspirated on his medication. He was struggling to breathe so we called an ambulance and he was rushed to Flinders Medical Centre. Zach had to be intubated and sedated. Seeing him with all the tubes and attached to a monitor was awful, we thought we had lost him. The next day they transferred him to Women’s and Children’s and slowly they reduced the sedation and he woke up. My husband and I took it in turns staying with him and he was never left on his own.
The doctor’s encouraged us to put Zach under the Palliative Care team but we resisted as we felt it meant we were giving up. Unfortunately, a couple of months later Zach aspirated again. It wasn’t as bad this time so we chose to drive him straight to the Women’s and Children’s Hospital. He was kept in for a few days and monitored and after talking with his doctor again, we agreed to meet with the Palliative Care Team to see how they could help us. It was also becoming to time consuming feeding Zachary orally and we noticed he was starting to lose weight so we also made the decision for Zachary to be nasal gastric fed.
A nurse from the Palliative Care team was sent to our house and she was very kind and sensitive to our thoughts and feelings about Zachary and the care we felt he needed..
Putting Zachary in the care of the Palliative care team turned out to be a good decision. It meant we no longer had to drag Zach in the car to the hospital for appointments or even go there ourselves to pick up supplies. The Palliative Care team brought everything to our door. They came regularly to change his nasal gastric tube and supplied all of the syringes as well and provided us with any special dietary requirements Zachary needed. They supplied us with a suction unit and we could call them at any time day or night for advice if Zachary had a cold or if there was something that just wasn’t right with Zach. Although Zach was still a very sick little boy, it helped a little knowing someone else was able to help us when we were unsure what to do and they were sympathetic to our feelings when we felt stressed and worried. The Palliative Care team were not there to take over as we had first thought, they were there simply to support and be there when you need them.
Zachary passed away suddenly in my husband’s arms just a couple of weeks after his 6th Birthday. It was awful and shocking, but the fact he was being held by my husband and it was at home gave us a bit of comfort.
A huge hole was left in our lives, we had been caring for Zachary around the clock since the day he was born and then suddenly we had all this extra time on our hands and our darling boy was gone. The house felt so empty without him.
Each day passes into another and life goes on. Six years have gone by but for us the pain of losing Zach is still strong. You never ever get over the pain of losing a child, however, I do believe your coping skills improve as time goes on.
We have since had another son, however, the memory of Zachary will always be alive in our house. We talk about him often and every year we celebrate Zachary’s birthday by going on a family outing and each one of us releases a balloon in his memory for Zach to play with in heaven.
Our journey with Zachary was at times difficult and painful but it also taught us so much. We met some amazing people along the way and have made some new friends. We are certainly a lot wiser and understand that getting upset over stupid things is a waste of energy. Spending time with family and friends and loving each other and having fun is what really matters.