Avery
“Avery is dead, Baba. My friend told me”,
said Noori, my 5-year-old kindergartner, when I picked her up from school that
day. I had known that ‘fact’ since it was on CNN.
Avery wasn’t quite 5-months-old. Avery was the only baby I had known with a bucket list. “Baby Avery”, as she was fondly called, became a household name after the blog written by her dad went ‘viral’. Avery was recently diagnosed with spinal muscular atrophy (SMA), a devastating neuro-genetic disorder with poor outcome. Although I am a pediatrician, I must remind myself that everything becomes ‘recent’ when you are just 5-months-old.
Avery was very special for a number of reasons. I got to know the baby entirely through Noori and the baby’s mother, Laura. Laura is a kindergarten teacher….no…THE kindergarten teacher who taught Noori. She is the kind of kindergarten teacher that I never had the privilege to be taught by when I was Noori’s age. Laura and her kindergarten classroom were the inspiration for Noori and I to start writing a joint memoir called ‘The Kindergarten Diaries’, via which Mr. Teddy Graham, valentine’s day, anniversaries, and so on, were captured through the eyes, mind and heart of the daughter-dad duo.
Noori learned about life through Avery. While Laura, during her pregnancy, was teaching at school, Noori would give me constant updates. “We need to be very careful when we are around Ms. Laura because she has a little baby inside of her”. When Laura went on maternity leave, “Ms. Laura and Mike (her husband) are very excited that they will have their baby girl soon”. Her excitement knew no bounds when she rushed home one day with the good news about Avery’s birth. That excitement peaked when Noori got to see and touch Avery when Laura took her to school, for show and tell. Soon after re-joining school, Laura had to take an unanticipated leave. Noori was the first one to tell me that baby Avery was unwell. The email sent out to us, as class parents, was a bad omen, particularly for me. While I was in 1st year of my pediatrics residency, I had been part of a team taking care of a baby who got diagnosed with SMA. That baby I will remember for the rest of my life. She was a bundle of joy to behold, entirely because of her animated expression through her eyes. By then she had lost motor function in her arms and legs. Yet, in that ‘vegetative’ state her eyes did the talking for her; eyes that ‘communicated’ happiness and contentment when she had been nursed and burped by her doting mother. That baby succumbed to her illness at 6-months of age.
The above rushed through my mind (and heart) and I felt compelled to approach Laura. Compelled, partly because of my ‘expertise’ in pediatrics and genetics, knowing about and ‘dealing with’ patients with SMA, but more so as my child’s favorite teacher who was most likely suffering. When I spoke to Laura, I did so with trepidation; neither was I Avery’s physician nor had I seen her to say much about her clinical condition. However, Laura was extremely brave under the circumstances. And she had hope. What reason did I have to tell her about my fears, concerns and the hopelessness inherent in SMA? I could have made it sound academic, with emphasis on the molecular genetics process, or I could have given her worst case scenarios (the severe kinds are always bad, based on medical literature). I didn’t know how I was going to go through that conversation, and I don’t know how I did during that ‘session’….
A few months ago, while I was visiting Karachi, I heard about the molecular test confirming Avery’s diagnosis of severe SMA, and my worst fears were realized. At that time I wished that I was in Houston to meet with Laura, Mike and Avery.
I despaired, as did Noori. I think she dealt with it better. She mentioned how baby Avery was ‘very very sick’. Her friends at school were her source of information that she was relaying to me. I did the token ‘talk’ about how the body can be affected by illness and that, at times, nothing can be done and when the person stops breathing there is death.
On our walk home from school, the day Avery died, I asked Noori what death was and what Avery’s passing meant to her. She shrugged her shoulders, looked slightly wistful and with a hint of irritation she said, “I don’t know!” She then bent to pick up some wild flowers by the roadside. “For Avery”, was the thought that crossed my mind.
What is death? Is it simply the absence of life? What about being clinically alive but being dead to life around you – a spiritual death? I recall asking Rayaan, my 10-year-old son, what Avery’s death meant to him. In his classic manner, he mumbled something that I could not quite comprehend – entirely my loss!
How do I explain illness, let alone fatal illness, dying and death to my 5-year-old? My medical training does not prepare me for that. Life, itself, prepares me for that.
Once we got home, given the circumstances, I did the best I could. I played with Noori. I admired her signature artwork of the day. I managed to scream less at her. I reminded myself to appreciate Noori for who she was, and to be grateful for the time I had been given to be with her.
Noori learned about life through Avery….
….And Noori learned about death through Avery.
Life goes on for Noori and her Baba.
But Avery is no more…yet she lives, and there is so much more….
Dedicated to Laura and Mike….but above all, to Avery.
Avery wasn’t quite 5-months-old. Avery was the only baby I had known with a bucket list. “Baby Avery”, as she was fondly called, became a household name after the blog written by her dad went ‘viral’. Avery was recently diagnosed with spinal muscular atrophy (SMA), a devastating neuro-genetic disorder with poor outcome. Although I am a pediatrician, I must remind myself that everything becomes ‘recent’ when you are just 5-months-old.
Avery was very special for a number of reasons. I got to know the baby entirely through Noori and the baby’s mother, Laura. Laura is a kindergarten teacher….no…THE kindergarten teacher who taught Noori. She is the kind of kindergarten teacher that I never had the privilege to be taught by when I was Noori’s age. Laura and her kindergarten classroom were the inspiration for Noori and I to start writing a joint memoir called ‘The Kindergarten Diaries’, via which Mr. Teddy Graham, valentine’s day, anniversaries, and so on, were captured through the eyes, mind and heart of the daughter-dad duo.
Noori learned about life through Avery. While Laura, during her pregnancy, was teaching at school, Noori would give me constant updates. “We need to be very careful when we are around Ms. Laura because she has a little baby inside of her”. When Laura went on maternity leave, “Ms. Laura and Mike (her husband) are very excited that they will have their baby girl soon”. Her excitement knew no bounds when she rushed home one day with the good news about Avery’s birth. That excitement peaked when Noori got to see and touch Avery when Laura took her to school, for show and tell. Soon after re-joining school, Laura had to take an unanticipated leave. Noori was the first one to tell me that baby Avery was unwell. The email sent out to us, as class parents, was a bad omen, particularly for me. While I was in 1st year of my pediatrics residency, I had been part of a team taking care of a baby who got diagnosed with SMA. That baby I will remember for the rest of my life. She was a bundle of joy to behold, entirely because of her animated expression through her eyes. By then she had lost motor function in her arms and legs. Yet, in that ‘vegetative’ state her eyes did the talking for her; eyes that ‘communicated’ happiness and contentment when she had been nursed and burped by her doting mother. That baby succumbed to her illness at 6-months of age.
The above rushed through my mind (and heart) and I felt compelled to approach Laura. Compelled, partly because of my ‘expertise’ in pediatrics and genetics, knowing about and ‘dealing with’ patients with SMA, but more so as my child’s favorite teacher who was most likely suffering. When I spoke to Laura, I did so with trepidation; neither was I Avery’s physician nor had I seen her to say much about her clinical condition. However, Laura was extremely brave under the circumstances. And she had hope. What reason did I have to tell her about my fears, concerns and the hopelessness inherent in SMA? I could have made it sound academic, with emphasis on the molecular genetics process, or I could have given her worst case scenarios (the severe kinds are always bad, based on medical literature). I didn’t know how I was going to go through that conversation, and I don’t know how I did during that ‘session’….
A few months ago, while I was visiting Karachi, I heard about the molecular test confirming Avery’s diagnosis of severe SMA, and my worst fears were realized. At that time I wished that I was in Houston to meet with Laura, Mike and Avery.
I despaired, as did Noori. I think she dealt with it better. She mentioned how baby Avery was ‘very very sick’. Her friends at school were her source of information that she was relaying to me. I did the token ‘talk’ about how the body can be affected by illness and that, at times, nothing can be done and when the person stops breathing there is death.
On our walk home from school, the day Avery died, I asked Noori what death was and what Avery’s passing meant to her. She shrugged her shoulders, looked slightly wistful and with a hint of irritation she said, “I don’t know!” She then bent to pick up some wild flowers by the roadside. “For Avery”, was the thought that crossed my mind.
What is death? Is it simply the absence of life? What about being clinically alive but being dead to life around you – a spiritual death? I recall asking Rayaan, my 10-year-old son, what Avery’s death meant to him. In his classic manner, he mumbled something that I could not quite comprehend – entirely my loss!
How do I explain illness, let alone fatal illness, dying and death to my 5-year-old? My medical training does not prepare me for that. Life, itself, prepares me for that.
Once we got home, given the circumstances, I did the best I could. I played with Noori. I admired her signature artwork of the day. I managed to scream less at her. I reminded myself to appreciate Noori for who she was, and to be grateful for the time I had been given to be with her.
Noori learned about life through Avery….
….And Noori learned about death through Avery.
Life goes on for Noori and her Baba.
But Avery is no more…yet she lives, and there is so much more….
Dedicated to Laura and Mike….but above all, to Avery.
Acknowledgment: A version of this narrative was first published by the biomedical journal Neurology [January 2013]; another version of this narrative appeared under the title 'Avery' in the book An Itinerant Observer.
Very brave tp put out pain and healing this way in a narrative.
ReplyDeleteSome times people think that doctors don't have emotions or that they are completely insensitive to what goes around them, just because we put up a brave/ga the whole picture.
me face. They don't know how much is confided in us and these narratives are just small part of the whole picture.
This was so touching!
ReplyDelete