Jen's Story

Jen has kindly agreed to share her story with the world in the hope that it will help others in her situation - she found out that she was carrying a baby with CDC and had an agonizing decision to make

My name is Jen and I'm from Minnesota - USA.  I am 34 years old and I recently have gone through the most traumatic events of my life.

At 18 weeks of of my "normal" pregnancy - via amniocentesis - my baby was diagnosed with CDC syndrome.  At the suggestion of every medical professional/ counselor  that I spoke with over the last week - it was strongly recommended that I terminate the pregnancy.  After much souls searching and researching over the internet, my husband and I decided this was the best option.  We were told that the baby would most like die before term or would die in early infancy due to medical/physical complications. I had the procedure done on April 16th, 1999 at 19 weeks of pregnancy.   It was the most tragic and heart breaking  thing I've ever been through.  I now have my doubts over what I had done, but I was barely  given time to think things over and due to the overwhelming evidence of how these babies lives are, I thought I was doing the right thing.

Now that it's over and I can think rationally again.  I'm not so sure.  I unfortunately didn't find any useful web sites.  I could only find statistical medical journal stuff and some pictures of CDC children - some of which were horrifying, others were re-assuring.  I was looking to find out how this syndrome would affect my every day life, what impact it has on other children (I have two daughters), and I wanted to know how I would managed to cope.  Since my husband and I both work full time (and barely seem to make ends meet most of the time), I couldn't see bringing a child with such severe handicaps into this world.  I couldn't quit work to care for a baby 24 hours a day - I couldn't give it up for adoption and I certainly couldn't afford to hire someone full time.   How could I possibly afford the cost of an institution or special schooling which this child would need?   How could I handle having a child that most likely couldn't speak or communicate effectively?   How much pain and embarrassment would it cause my other two children?   The agony of decision still haunts me.

I do believe that if I continued the pregnancy, we would have coped some how.  Now with modern technology, you can find these things out ahead of time, but it's not always a good thing.  Incidentally my baby (boy) was missing (on chromosome 5) from band p15.3 through p15.1.  Depending upon who you talk to, this can be considered a micro deletion, but you only have to be missing part of p15.3 to have some symptoms of CDC.  The baby was also missing just a micro portion of chromosome 22, not enough to cause full blown DiGeorge syndrome, but enough to cause problems of some sort.  Also - with chromosomes 5 and 22 stuck together, they couldn't predict what problems that would cause, since they don't have any documented cases of children with this particular occurrence. The geneticist stated that our baby would have a very severe case of CDC.

No one can ever provide me with the assurance that I did the right (or most humane) thing.
 

Everything is still so raw and emotionally painful for me right now, that it's easy to have my doubts and guilt.  As each day passes, I feel better and I know  with time this will all become a bad memory.  Logically I know there was no other choice, but it's impossible not to be emotional about it.  All of your hopes and dreams for your child are lost This was to be my last baby (and since it was a boy - which we really wanted - it made it so much harder).

My husband is relieved that it is all over, and emotionally he's fine. It's harder for me since I obviously was more "in touch" with the baby.  I felt it moving right up until the termination - which was really traumatic. Even though I know the horrors associated with this syndrome you can't help but know that you are destroying a child, regardless of the child's disabilities.

I will get on with life, but it will be a long while before the sadness fades.   I know now that I will try again for another baby.  There was nothing wrong genetically with either my husband or I and fortunately we don't have any trouble getting pregnant.  I know I will have another amnio at 14-15 weeks and I certainly won't inform anyone of the pregnancy until after that.  I know CV sampling can be done at about 10 - 12 weeks, but I don't like the potential risks to the fetus associated with this test. I'm just thankful that I have two wonderfully healthy daughters (ages 3 & 4) that keep me focused on life.  I just pray that I'm fortunate enough to have a normal baby - something I took for granted with my first two.

I don't mind if people want to contact me. Having been through this tragic situation, I feel the need to help others who may find themselves in similar situations.  I know what I would have done differently and it's so hard to think rationally and clearly during a time like this.  I had a wonderful grief book from the genetic counselor and I did read it cover to cover, but it didn't answer all my questions and there are no guidelines as to what you should do in situations like this.  The best guidance I could have received could have come from talking personally to someone who had been through it.  Reading about it and talking about it are two different things.

If you wish to contact Jen I will forward any e-mail to her. Email me at laineyp@bigfoot.com

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