Friday, November 12, 2010

Answering the taboo questions...

 You know those questions that everyone wants to know the answer to, but no one wants to ask? I've answered them below.

Question #1: Are you an older mom?
Charlotte came into this world one day after my 30th birthday. Is 30 considered old? I hope not. In reality, 80% of babies with Down syndrome are born to women under the age of 35. It is true that the odds of having a child with Down syndrome increases with age, however more children are born each year to women under 35, therefore increasing the number of babies born with Down syndrome. At age 30 our odds were 1 in about 900.

Question #2: How did you not find out about the Down syndrome before she was born?
We chose not to have the quad screen done early in my pregnancy for a few different reasons; first, I wasn't high risk due to my age and previous pregnancies; second, there is a very high incident of false positives on those types of screenings; and third, it would not have made a difference one way or the other. Mike and I would have accepted and loved any child we had and would not have chosen any other option if we had found our prenatally. It is amazing to me that the termination rate for Down syndrome is 90%, something I can't understand, though that is another blog post.

I did have a 20-week routine ultrasound, and no markers for Down syndrome were found. Charlotte's heart at that time looked healthy. We later found out from our cardiologist that about 50% of AV canals are not found until after the baby is born. At that ultrasound we did find that Charlotte had a twin, and the fetus had stopped developing at 14.5 weeks (talk about a shock!). However, there was nothing that gave any indication of things to come.

Question #3: How did nobody realize Charlotte had Down syndrome until the day after her birth?
 I remember calling Missy after talking to the pediatrician and telling her that they thought Charlotte had Down syndrome. She was in complete shock...she said she had stared at Charlotte for the longest time the day before and had not even a little inkling or feeling that she may have Down syndrome. After Charlotte's birth, like many babies, she was a little swollen. That, coupled with the fact that she had a hat on the majority of the time hiding her ears and neck (her two most prominent features that point to Down syndrome) made it difficult for anyone to suspect anything. Though, as soon as the pediatrician said the words to us, I knew it was true and never questioned it, even though it was a few weeks until we had proof through a blood test.

Question #4: Does this increase your risk of having another baby with Down syndrome? 
The type of Down syndrome Charlotte has (trisomy 21) is not genetic. There are three types of Down syndrome; one of the types can be genetic, but most are purely just a fluke. Some say that are odds of having another child with Down syndrome is 1 in 100 just because it has been shown to have occurred before. However, the geneticist we saw said that our chance of having another child with Down syndrome is the same as any other couple our age. Many ask if we are going to have any more children; the simple answer to that? At this time we have a 5 year-old drama queen, a son in the midst of the "trying 3's", and a baby who just had open-heart surgery...what do you think?

There are more questions, I am sure, but right now I am off to deal with my spunky 5-month old that no longer naps....makes for some long days!  Have a good weekend everyone!


  1. Great info Em! You and Charlotte are educating so many. people, myself included. Love you guys!

  2. Yea thanks for all the good school we were always told that the parents are the experts in the field not us, because usually they know more about the diagnosis than we do because they research just that one topic.

  3. 90%!! That is so sad I can't speak from experience on how difficult raising a person with a disability is. But all the people that I have met only inspire me. That is why I feel that no matter how a person is made they all have a purpose. Paul


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