MCAD and Pregnancy

Its four months until I turn 28. I am getting married in 2 years and saving for a deposit on my first house. So naturally my Fiancée and I have discussed our future and the possibility of having our own family.

We adopted a little Jack Russell 7 weeks ago called Flo, so that will do for the moment with regards to a family!

Flo

The prospect of having my own family and being pregnant is something I have thought about since I was about 13 years old when I first went to the Genetic Metabolic clinic and was told 'you can be our Guinea Pig when you have your first baby'. WHAT?!?! I had only just traded my Barbie dolls for a 'Backstreet Boys' poster! I was not old enough let alone mature enough to even consider that far into my future. I still could not spell MCAD (Medium-chain acyl-CoA dehydrogenase deficiency - I can now!).

I have always been fascinated by science and have always had a thirst for knowledge, this has probably only been increased to further understand my own genetics. I have always understand that two carrier parents have a 1 in 4 chance of having a child that would inherit the full condition (me) and 1 in 2 chance of having a child which, like them, would be a carrier (my younger sister).

So that's the basic principal.

My younger sister is a carrier of MCAD and when she was pregnant with her beautiful son, I explained the above principal to her. She consulted her Doctors, who then put her on to mine. With my blessing (and written permission) they were able to access all my medical files and have a number of tests to check the likely-hood of her son also inheriting the condition. All was fine and everyone is 100% healthy.

A little trickier for me perhaps. My Fiancée can also get tested to see if he is a carrier, which is great but it does not prevent anything from happening to me. Everyone else is interested in the inheritance part, my parents (who never gave up when others had told them too) and I are more concerned about my health. Will I be physically strong enough to cope with pregnancy and the stress of child birth? Would I have to have a caesarean? Am I wasting my time worrying because the probability of having children naturally is out of the question? I certainly do not know any of the answers.

Studies have shown there is a correlation between the age of the mother and problems during in pregnancy/labour and the higher increase of children born with physical/ mental disabilities. Does that mean by the time I am married and have my own house, probably 30, I will be too old and that I will further increase the chances of problems? If anyone has the answers please tell me!!!!

I would certainly need a very supportive and committed team of people around me and a lot longer recovery time. Is it worth jeopardising my own health and having to rely on other people to take time out of their lives to help? Or is it daft to even worry about these things when there are thousands of children in the world who need a family?

I could spend months philosophising on all of this but some information would be better. I have searched for 'MCAD and Pregnancy' on Internet search engines. The first link was about women undiagnosed with MCAD who have died during in pregnancy due to liver failure. Brilliant. Not what I was hoping to read. Apart from that, I found a lot of information pages for parents of children being tested or diagnosed with MCAD. What about me, what about the rest of us, if there are any more of us, I don't know if or where they are I have never been told nor found anyone. The rest of us want to know what comes next. What happens after infancy? Or Mr & Mrs Expert do you not know? Or if you do know please share it with the rest of us. I do not want to spend my life on countless trips back and forth to the hospital just to get answers or be told 'we will look into it and run some tests' only to be forgotten about.

MCAD and Pregnancy.......to be continued......when I know!