Before we knew that Marfans ran in the family we found out that my daughter had hearing loss. She was 5 and was starting kindergarten. She didn't talk very much but we just thought that she was shy, she was shy she still is. Sometimes she wouldn't answer us but every parent has heard about selective hearing and that is what we blamed it on.

A few months before she started school we began wondering if she was hearing us. It took a while to go through all of the tests and finally find out what we needed to do next. Four months into her kindergarten school year she received her hearing aids. That's when we found out that she had been reading lips since birth. She does not have total loss but it is classified as signifiant. When my youngest son had his hearing tested at birth we found out that he has a moderate hearing loss. I wish that they had that test when my daughter was born. But they didn't develop the test until about a four years later.

My daughter is 11 now and in the 6th grade. She has used an FM system provided by the school since she was in first grade. The teachers wear a microphone around their neck and she has a special hearing aid with a reciever on it. She carries the microphone with her from class to class so she can hear her teachers better. It's a pretty cool system actually, they have worked out ways that she can still hear the class but this way she doesn't miss what the teacher is saying. There is one other child in her grade that has an FM system so she doesn't feel quite as alone as she did when she was in elementary school.

We had a hard time getting my son's hearing aids because they kept losing his records. When they finally managed to straighten everything out he had his first ear infection at the exam to ok his hearing aids. That meant another delay. By the time he finally got his hearing aids he was old enough that it was a challenge getting him to wear them. He is in first grade now and still insists on removing his hearing aids right after school because he has had so much
trouble getting used to them.

The experts still don't know if Marfans causes hearing loss or not and there is still testing going on to find out. We have been told that the two conditions are not related, however, I am not yet convinced. It seems a little bit too unlikely that my two children that have Marfans would also have hearing impairments but that there would be no connection.

We are unsure if my middle son has Marfans we were hoping to find out 5 years ago. But after the tests the doctors were still unsure. We do know that he does not have any hearing loss. He is 10 and in the 4th grade. He has to continue having tests every year until he is 18 or until they can say for certain that he either has, or doesn't have Marfan's. Of course if he does he still has to have the Marfan's checkups every year.