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Severe Combined Immunodeficiency Eric’s Diary VII: The little bubble boy

This deficiency is not usually noticed till about six months since the newborn would be carrying it’s mother’s antibodies for the first few weeks after birth.

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Please don’t call me “Mono”.  I hate that nickname because everyone calls me that now.  “Bad news travels like wild fire” – I guess that saying has never been wrong. 

On the brighter side, I went for my medical review today.  According to my doctor, I am doing great.  But I have something very interesting to share with you today. 

This time, it’s not going to be about me.I was at the Out Patient Department (OPD), when my curious-little-self decided to wander around the hospital.  I was almost at the isolation unit when I heard a nurse shout : “Hey, little boy! What are you doing here? This is the isolation unit.”

I told her I was just curious.  And I asked her a few questions about what I had seen so far.

 “Nurse, on my way to the isolation unit, I could see a boy. It was like he was in a glass container.

 I could tell from his posture that he was sad.  What could be wrong with him?”

She replied : “That’s the bubble boy and you were not supposed to be around here.  Let’s get you back to your Mum.”

You should have seen  my face! I don’t like being treated like a child but my structure betrays me. 

This time I felt like shouting out the fact that I am a teenager and not a small boy.  But surprisingly, I didn’t. I guess my therapy is at work after all. I was still in a long queue, waiting to see my doctor when I heard a nurse mention the phrase :“bubble boy”.

 I couldn’t help but eavesdrop ; I wanted to know more about him.  One of the nurses said that the bubble boy may pop out of his bubble today.  She said something about a surgery and an enzyme.

I couldn’t get the full story because just when the gossip was getting to a climax, I was called to see my doctor.  However, I intended to get more information because it sounded interesting.  I thought  my condition was the worst till I heard about this bubble boy.

After evaluating my treatment, I told the doctor that I had some questions about the bubble boy. 

When asked how I got to know, I told him that I heard the nurses talking about him.

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The doctor mumbled something about the nurses’ behavior being unethical and some other things.  But I was really not interested in that. I wanted to know the story about the bubble boy and why everybodycalled him that. Since I had heard almost everything, my doctor had no option than to tellme about the condition just that he withheld the boy’s name (besides this was strictly for educational purposes).

So from my conversation with the doctor, I got to know that the boy I saw had a genetic condition known as SCID (Severe Combined Immunodeficiency).

 His body can not fight against any form of disease ; even catching a cold could be fatal. This is because these cells (produced by the bone marrow and thymus gland)  that are responsible for this action, are either not present or are defective. 

Therefore, he has to be kept in a sterile environment for the rest of his life till a decision is made about his condition.  He is called ‘the bubble boy’ because victims of this disease are usually isolated in a sterile environment and are hardly involved in any physical contact lest they get infected.

 He said this deficiency is not usually noticed till about six months since the newborn would be carrying it’s mother’s antibodies for the first few weeks after birth.  The antibodies that the baby carries are necessary for the fight against any infections. 

However, there comes a time where the effect of the mother’s antibodies wean off, and the baby has to acquire its own cells to fight for itself. That’s when the disease is diagnosed because such children present with recurrent infection due to a compromised immune system.There is always light at the end of the tunnel. This means that the bubble boy’s situation is not hopeless after all. 

He has two options : either have a bone marrow transplant or go through  gene therapy.  The former is a more common treatment which requires a donor (preferably a match) and careful screening to prevent acquired diseases after the transplant.  His body also needs to accept the transplant because if this does not happen, he may die.

Gene therapy is an alternative to a bone marrow transplant.  This involves incorporation of missing genes into a cells that can divide rapidly and then later inserting it into the individual so that the individual’s system is stored back to normalcy.

All this seems quite complex but I wish the bubble boy all the best. I hope that his surgery is successful so that he can get the chance to embrace life and go on vacations without worrying about any bacteria in the air.

Author:

Naa Adzoa Adzeley Boi- Dsane

University of Ghana Medical School

naabd6161@gmail.com

Credit- www.adzeleydeluxy.wordpress.com

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