AOSupport

I have been reading stories and thought I would ask a question about multiple children with AOS in a single family.  I posted a question months ago, so this is kind of an add-on. 

My husband and I are thinking of having another child.  Obviously, AOS has been a big consideration in our decision.

We have a beautiful 4-year old daughter Kirsten who had many complications in her first three years of life.  I was wondering if it seems like AOS is more common in your second child if your first has AOS. 

In the stories that are posted, it seems like AOS is in the second or third child mostly.  For the ones that state that the child with AOS is the first child, I didn't see if there were additional children after that with or without AOS.

I know that there is no test for AOS and that this is not an exact science, but thought I would ask anyway.  We went to a genetic doctor and were told that we have a 17-23% chance of having another child with AOS.

Any comments are appreciated.

Well, from my understanding of genetics, in order for you to have another child with AOS, either you or your husband or both of you have to have the affected gene. And if that is the case- it doesn't actually matter which number kid it is, they each would have an equal probability of having AOS. Does that make sense? It is like a family who has 3 girls, isn't actually more likely to have their 4th child be a girl, it is still 50/50. I know that doesn't give you the answer that you want to hear. Since neither you or your husband have any signs of AOS yourselves, your chances are better that your daughter's AOS was a genetic mutation and not inherited. BUT... there have been some reported cases where neither parents have AOS and have multiple children with AOS, making it look as though they are carriers of AOS. I don't think that possibility of a recessive gene has been confirmed yet and likely can't be until they find the gene.

Again I know that isn't a straight answer and not what you wanted to hear but that is the best I have for you. I am not a doctor though so I can't guarantee all my information is 100% accurate so of course you can always talk to your geneticist too! I think it is probably one of those things that you will just have to trust your gut with until they can find the gene/s.

Sorry.

Thank you so much for your reply.  Obviously this is a hard decision for us.  We wouldn't trade Kirsten for anything, but have to face the facts that it is very possible that we would have another child with AOS and it could be much worse.  But then again, everything could be fine.

I tend to be a person that likes facts and figures, so not having concrete answers is very hard for me.  I don't want to miss out on having another child because of my fears.  Looking back, I never would have thought I would be strong enough to handle what we have with Kirsten's health.  But we made it through and truthfully we are a stronger family unit because of it. 

Thanks again for the response.  I knew that I couldn't get a concrete answer.  Sometimes it just helps to have someone else say things out loud (or in writing).

Kacee 

Just to add on to what Ky's Mom said.....

We had a recent visit with a geneticist for our second son who has been diagnosed with AOS. This is the information that we were provided with. I want to point out I'm not a doctor, and science was definately not my thing in school.

There are two genetic scenarios that can exist: recessive or dominant.

If you ever look at a picture of DNA, it looks like 2 long strands wound around each other. One strand is passed on to a child from each its mother and its father.

In the recessive case, both parents must pass the damaged AOS gene on to the child. Neither parent would exhibit characteristics of AOS, but they are "carriers", as they only carry one-half of a mutated gene, but two halves together produce recessive-type AOS. So the odds of this happening are 25% per pregnancy.

For something a little more visual, imagine mom's genes as being numbered Mom1 and Mom2, and dad's Dad1 and Dad2. For simplicity sake, lets say both mom and dad have the damaged AOS gene somewhere on strand 1. So in the creation of life, there are four combinations that can occur -

1) Mom1 and Dad1 chromosones are passed onto your child -  this is where both damaged genes are - your child will have AOS.

2) Mom1 and Dad2 chromosones are passed - your child will only have one-half of a damaged gene (from Mom1) - your child is a carrier.

3) Mom2 and Dad1 - child will only have one-half of a damaged gene (from Dad1) - your child is a carrier.

4) Mom 2 and Dad2 - absolutely no effect on your child.

In the case of dominant AOS, one parent has AOS. The odds of it being passed on in a pregnancy is 50%.

Again for something a little more visual. Let's say it's Mom who has AOS and it's located on strand Mom1. So in the creation of life in this situation, the following four combinations can occur - 

1) Mom1 and Dad1 chromosones are passed onto your child - passing the damaged gene from Mom1 - your child will have AOS.

2) Mom1 and Dad2 chromosones are passed - passing the damaged gene from Mom1 - your child will have AOS.

3) Mom2 and Dad1 - no effect (or possible carrier if Dad is also a carrier)

4) Mom 2 and Dad2 - no effect (or possible carrier if Dad is also a carrier)

Another possibility is a random mutation of dominant AOS. Neither parent has AOS nor is a carrier. Something happened with either the egg or the sperm that has created the mutation. In this case, the chance of having another child with AOS is virtually zero.

Hopefully this helps a bit. As Ky's mom said, it's probably not what you want to hear. My hubby and I are not at the point of discussing more children yet, but it will be something we will need to consider once we know more about our circumstances. Our geneticist offered to x-ray our hands and feet. I'm assuming she is looking for slight deformities, as neither of us have any outward characteristics of AOS.

I hope that someone will take the time to share with you their experience. No matter how small their contribution is, it might just be the answer you're looking for.