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When I Learned My 8-Month-Old Wouldn't Survive Past 3 Years

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Helene's son, Samuel.
Helene’s son, Samuel.

We weren’t supposed to have a fourth child. We had agreed to stop after our daughter was born. But I changed my mind and convinced my husband we should have another child and that our family just didn’t feel complete yet. When Samuel was born, he shocked us all at 10 pounds and 14 ounces. He was huge and perfect and he fit right in our already busy lives. He was the easiest baby, always smiling and loving all the attention bestowed upon him by the older ones. He was so strong. At 3 months old he could turn onto his tummy and at 6 months old, he could push himself backwards across the living room or stand on all four.

But he didn’t grab or manipulate his soother, his bottle or his toys. I figured he might need glasses since poor eyesight runs in my family. The optometrist agreed he was farsighted and because his retina was somewhat discolored, she would refer him to see an ophthalmologist a few months later. By then Samuel’s eyesight had declined even more, he informed us the cherry-red spots in Samuel’s eyes indicated a systematic issue and told us a geneticist would see him a few days later. My husband was very sick that morning, so we decided I would go to the appointment alone with Samuel to avoid spreading this illness to other children. I expected to discuss our genealogy and maybe do blood work.

She quickly examined Samuel and asked if he startled often, which he did. I can remember thinking she knew exactly what that issue was. She quickly told me my beautiful, perfect baby would die before the age of 3 years old. He had a rare genetic neurodegenerative disease more often found in French Canadians and Jewish populations. He had Tay-Sachs disease. I am French-Canadian and I had never heard of it. Samuel would lose all the skills he had learned, one by one. His ability to crawl, turn over or hold his head. His body would become progressively weaker and he would have difficulty swallowing, digesting and breathing. He would soon have seizures and lose muscle and mental function and by age two become unresponsive to his environment.

There was no cure, no medical trials or natural history studies available to him.

Nothing modern medicine could do to help my precious child.

I was to take my sweet baby home and simply love him.

I was in shock. I took Samuel home and left the house without answering my husband’s question on how it went. I couldn’t say it. I couldn’t admit it. I couldn’t process it. I told no one and only came home once I knew everyone would be sleeping. How do you tell your husband that our 8-month-old son would die? At 5 a.m. my husband woke up, and since I was still awake, I decided to tell him before the kids woke up. He was in shock, in disbelief, enraged and crying.

Our families lived hours away, so later that day my husband called his family to let them know. I couldn’t talk to anyone about it so I decided to write my siblings and my closest friends an email. I told them Samuel would die and not to contact me until I was ready. That night, my big sister arrived without warning and I hugged her fiercely. I realized how much I needed her; our parents died many years before and she knew how devastated I was. All I wanted was to hold Samuel, curl into a ball with him in a dark corner and stop time.

We announced it to our other children and other friends later that week. Many told us they couldn’t imagine how we felt. I disagree, every parent can imagine it. We simply would never want to.

Author's son, Samuel, smiling in play chair

Originally published: May 2, 2016
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