My beloved baby Ruthie was born April 8, 2004, to my son Harry and his wife Helen. It was to be their first child and my first grandchild. We knew it was a girl. Her name had already been chosen.
She was the loveliest little thing you ever saw. She had the bluest eyes and the longest eyelashes and I always chided my daughter-in-law that I love her so much, I will take a finger home. So it was to be that they checked my pockets for a finger before I left. It was a joke that left little Ruthie giggling.
But in the following months, we realized that something was wrong, when she couldn’t hold her head up and roll over like babies do. Something was amiss. We thought that this was a pattern some babies go through. Not all develop at the same rate.
We made an appointment to see her pediatrician who performed some fundamental tests on Ruthie in the office, in which he concluded that it might be a genetic problem. He didn’t seem to be overly concerned. However he gave us a requisition to see a Neurologist. It was a couple of agonizing months until we saw one. One doctor thought it might be her hips, another one thought it might be delayed growth syndrome.
During the next few weeks, seeing Ruthie almost two or three times a week, I noticed her being more listless, not feeding well, a little choke here and little one there. In the very beginning, she had trouble taking to the breast. Later on when that didn’t go well she could hardly suck down 4-6 ounces of her formula. Her cereal and fruit also was chocking her. But some days were better and we thought it might have been a little cold starting.
By six months old, she could not sit up or look like she wanted to crawl. However, she was gaining weight and was delighting us every day with new adventures.
All the while, this little baby was teaching us about life, love and happiness. She was the most blessed little thing I ever held. We always played patty cake, Baby Einstein where she clapped her hands together and her little feet went with the music. It was a delight to behold. My heart swelled with such love.
We got an appointment the last week of November 2004 to see a top neurologist at the Montreal Children’s Hospital. She did an EMG and blood tests on her Ruthie. My son and daughter-in-law were in the EMG room a long time and I was starting to worry. When they came out, my heart sank as I looked at them. She concluded that Ruthie had (SMA) Spinal Muscular Atrophy, Type 1, a fatal genetic marker which was missing in her DNA.
November 27th, 2004, was the darkest day in my life. We rushed little Ruthie to the ER and four hours later they tried to save her life but she passed away with a cupid smile on her face. She suffered respiratory distress, which is usually how they die. Type 1 babies live only about a year, maybe two. She was 7 months.
Her death held for me a spiritual meaning. “Her work was done on earth. Now God needed her.”
Little Ruthie taught us about love, hugging, singing, music and much joy.
Note: There is no cure for Spinal Muscular Atrophy, a genetic degenerative disorder. It affects 1 in 6,000 who have inherited a defective gene. One from each parent. Carriers are sent for genetic counseling. Chances of having a sick child are one in four. The disorder is caused by a mutation in the spinal muscular neuron gene. Children of Type 1 have no muscle tone and are called floppy babies.
My son and his wife became parents December 1, 2009 to a boy. His name “Joshua Miracle.” Free from SMA.