Risks of marrying someone with Noonan

hi, I’m 29 y.o and about to marry my boyfriend, he is 31 y.o. I suspected that he has noonan syndrome, although it looks very mild , like short(160cm),large head& forehead, eye problem. His niece has Turner syndrome and one of his uncle and cousin has down syndrome (his parents looks OK. I’m worried and have a few questions: what are the risks for him & me. and later if I become pregnant? any risk to the child? does people with Noonan usually have health complications and die before reach 40? thank you so much for your answers.

Hi again Kathma - You might want to have a look @ the link below. Its very helpful. Just found it on one of the other discussion pages.


Thank you Tony and MBW for your answer & advice. I asked him to have the test but he and his family dont want to do it(for several reasons). probably they worry if it turns out positive, wedding will be off. ( I’m in Asia and parents have a lot of say in this )
I’m really in a dilemma. well I guess I just can pray, hope for the best and go through with it then. Thank you for the care & luck, and for those who loves someone with NS in this support group, my best wishes and prayers to you as well.

Hi Kathma - My son has mild Noonan Syndrome. Neither myself or my partner have Noonan Syndrome so my son is the first to have it. We have been told that if he was to have children, there is a possibility that his children might have Noonan Syndrome although i am not sure of the percentages / statistics. Initially it was a shock to us but you learn to manage and thankfully he has had no serious problems. I havent heard anything about complications and dying before 40. The Noonan support groups are great for information so hopefully someone will read your post and give you some more information about your concerns. All that said my advise would be to not worry too much and go with the flow. Life sometimes is complicated anyway regardless of your situation. Best of Luck - Tony

If he actually has Noonan Syndrome, then there is a 50% chance that each of his potential children will have Noonan Syndrome. And, even if his N.S. is mild, his children could have more complications. But, these are all BIG ifs! He may not even have N.S. or could have another syndrome with similar characeristics. A geneticist consultation and testing would provide more answers.