Should Parents of Kids With Genetic Disorders Have More Children?

I would personally never knowingly risk passing on an untreatable, debilitating disease to a child.  Granted, things can happen without any history of bad genetics, but if I or my husband were a carrier for something like this, we would not have had children.  I have a friend with Huntington's disease, and although she very much wants to get pregnant, her and her husband have elected to adopt instead - I think that's incredibly brave, smart and selfless.

I would not have children if I knew this disorder could affect all my children. There are a lot of healthy children with no permanent homes that need love.

I had a vision for a PSA the other day (I'm a director in my head). 

You see a bunch of kids one at a time, giving a speech that goes something like this:

My name is_________ and I have special needs.  My mom was told that I would never amount to anything, that she shouldn't keep me, that I was useless.  She was made to feel as if it was her fault, because my disorder is genetic.  After she had my older sister who also has___________, they told her she shouldn't have any more kids.

My name is _____________, and I am loved.  Because of me, my family learned compassion, foriveness, and grace.  Because of me, the world is a better place. 

I have special needs.  And there's nothing wrong with that."

My imagined PSA includes people like the actress that plays Becky on "Glee,"  Marlee Matlin, Chris Burke, Daryl Hannah, Dan Akroyd, the guy who created Pokemon, and then a bunch of kids with Autism, Aspbergers, Downs, and other genetic disorders. 

t's interesting to me that people seem to have the attitude that kids with genetic disorders are "defective" or not worth having.  I have a friend who has a five year old daughter with a severe form of Autism.  Their younger son was recently diagnosed with Autism as well.  Those kids have brought so much joy to the lives of so many people.  They are amazing and funny, and their parents are better people because of them.  So when people tell her she shouldn't have more kids (she's pregnant again now), she can easily tell them she would welcome another child like her older two.  They make the world around them better.

My husband has a genetic disorder that affects the development of the heart and upper limbs.  He has a relatively mild congenital heart defect and his hands are slightly malformed.  We have a fifty-fifty chance of passing this on to any child we have, as they will either receive a copy of his gene or mine.  It is completely penetrant (meaning you either have it or  you don't), but the range of severity goes from no cardiac symptoms to the entire left side of the heart missing (which has a survival rate of less than 1% after an 8 hour postnantal surgery) and from no visible effects on the upper limbs to missing digits and shortened arms. 

I was on the pill when we got pregnant with my son, now three years old.  We consulted with geneticists as well as the two foremost experts on this condidtion (it's quite rare) in the country at NYU and Johns Hopkins.  We had a fetal echocardiogram done to look for any obvious heart problems and a very thorough sonogram done with special attention paid, obviously, tot he hands.  He was (seemingly, as we haven't had genetic tests done) unaffected.  As is my now 6 month old daughter.  We took similar precautions during my pregnancy with her. 

Continued...

While there is the potential for a catastrophic outcome with this disorder, it's somewhat low and is not the same, to me at least, as a decision to have children that are certain to have utterly debilitating disorders.  I respect the right to make that decision, but it's not one I'd make.  I'd also like to second PP on the idea that genetic disorder does not equal defective.  My husband, despite his heart conditions, runs and even completed the Big Sur marathon (a tough one, I'm told).  He's not "less" somehow because his TBX5 gene is different than mine.

I have a son with Downs Syndrome and at times its difficult.  I want one more child and one day I will. There's a risk that my next child will also have Downs Syndrome but thats a risk both my husband and I are willing to take. Why because there's always a chance that our next child will not have a "disorder" and regardless whether they do or dont we will be there for them like we have been for our son. 

I think (because I am a logical  person) I would weigh the amount of time I was required to dedicate to my child with a health issue, and the percentage risk of my potential other children having it. It sounds awful, but I think if my first child had a really time consuming health issue I would feel as though I was neglecting my second, even if thye were fine, because my first would always take so much time, care and attention. That said, I really wouldn't know until the issue truly was mine! If the risk that I would pass on a genetic defect was high, I probably wouldn't even take the gamble, I would have adopted.

The decision to have a child with the risk of genetic disease is a deeply personal one and it is not something that anyone can say is right or wrong. I have lupus and there is a chance that my child could be born with neonatal lupus or develop lupus later in life. I have watched my parents sit by my bedside praying that I survive and seeing the toll that it takes on them is heartbreaking. I could not knowingly put my child in a position where they might have to fight for their life. In my case, I had to weight what I believe is my selfish desire to have the "whole motherhood experience" against what is best for my heath and the possible health implications for my child. After years of thought, I decided that adoption was the best option to complete my family. It made dating a little difficult but eventually I found someone who thought adoption was the best way to make a family.