Thursday, February 11, 2010

Not Because of the Common Cold

The genetics doctors were right. Not everyone will understand what the word syndrome or genetic disorder means. Some people, even family, will think that it all genetic disorders are hereditary (But of course no one would really think that it came from their side of the family.. and sometimes they are hereditary) or that it was because of something that was done during the course of pregnancy.

One time this lady told me that she remembers that I had frequent colds while I was pregnant. She then adds this could have happened because of that. I then added that I have allergies (rhinitis), but she still insists that it could be because of my frequent morning colds. It almost seemed like she was so certain of her “hunch”…perhaps she really felt it in her gut.

Truth is WHS was not caused by anything that I did, or didn’t do, or overdid or didn’t do enough. WHS was a result of a chromosomal abnormality. It happened during the moment of conception when the mother and father’s chromosomes unite to form a new, unique human being. Chromosomes are long strands of DNA complexed with proteins and RNA that condense and allow for equal distribution of the genes when cells divide. Each chromosome contains hundreds or thousands of genes, and every cell needs to have two copies of each chromosome in order to maintain genetic balance. At the time of conception, an extra copy or missing copy of a chromosome or even a part of a chromosome disrupted normal development and thus resulted in syndromes that are caused by chromosomal abnormalities. This is true for Wolf Hirschorn Syndrome where the disruption occurred in the 4th chromosome (a portion of the arm of the 4th chromosome is short or missing). It all happened during conception... before I even knew I was pregnant.

So there, WHS happened not because I stood in front of the microwave while I was warming up my soup. It was not because I used the photocopying machine frequently while I was pregnant. It was not because of pesticides that I might have been exposed to since the school that I work with is surrounded by fields. It was not because I may have accidentally sniffed some chemicals while I was having my nails done at the salon. It was not because I ate overcooked broccoli or a banana with dark spots. It was not because I had one too many fish. It was not because I had the flu shot. Not because of the swine flu shot either. It was not because I let the dog lick my face or because I frequently went up and down the stairs. It was not caused by that one time that I had to take my prenatal vitamins in the evening because I forgot to take it in the morning, nor was it because I had missed taking my prenatal vitamins for one, maybe two days. It was not because I ate the cracker that fell off the floor that I picked up after 5 seconds. It was not because I happened to be with special needs children for the most part of my day, nor is it because I happened to watch a documentary on HBO about children with special needs while I was pregnant. It was not because roses are red or that violets are blue. AND It is most certainly and definitely is not, and I’m sorry to burst your bubble, because I had a cold.

3 comments:

Kristy said...

I love that you wrote this. I too had people say - maybe it was because I exercised too much, or didn't eat enough or because I had a cold in my first trimester. Even now, I still have some friends and family members say to me - "maybe he will grow out of it," and another favorite "maybe you should get a second opinion." This makes me so mad because I have explained until I am blue in the face that this is not a curable disease, it is a syndrome. This is why I like to blog. I now know that there are other moms out there that understand what I am going through, because unless you are in our shoes you will never truly understand. Hang in there!

:) Kristy

Lauren said...

Sometimes it is CRAZY what people will say when you tell them about Wolf Hirschhorn Syndrome. Suddenly everyone forgets high school biology class and simple genetics and just turns into a blabbering clueless person. How does that happen?

I have heard so often these statements or questions: "Is there a cure?" "What is the treatment?" "science is always advancing they will find a cure for this."

Like it is cold or cancer or something. Maybe just give Norrah a little chemo - see if that adds her missing chromosome back. Oh my!

I do believe that in many ways she has been healed and will be healed to completion one day. But, I am not counting on the medical world to be what heals her. :)

God is good!

isdadoinks said...

Although it can be quite annoying, I now find it quite amusing that they are just as puzzled as I was (sometimes still am). If it only was that easy... to have to project the cause to something else.

A syndrome does not have a cure, but through services the situation can be alleviated to help our children get a better quality of life... and with moms like us? I do not doubt that they will. GO SUPER MOMS!

In my country, there are still some people who believe that when you are in pain or are sick Vicks Vaporub is the cure all or that you should drink 7up and when you burp its gone. I particularly like the latter. If only it was that simple huh? i hope it was as easy as "burping" the syndrome away.

'Burp!"