My name is Sinead and I'm sixteen. I would like to know if women with PFFD had gotten pregnant. I have Sacral Dysgenesis and my doctor said that can be a factor on me not menstrating. If any women had problems with their pregnancy. If any women have Sacral Dysgenesis please contact me.
There are LOTS of articles on sacr. dysg.
You need to google "Sacral dysgenesis" and "pregnant". You will find studies on causes (linked to diabetic diet in some studies and linked to a recessive inherited mutations such as E283X and HLXB9 in which over a 1/3 have SD and do not know it.... unlike PFFD, SD has definite syndromes attached) and the issues of getting pregnant are also found with the same search.
There is a good starting article at http://www.genome.jp/dbget-bin/www_bget?omim+600145 which outlines the need to find out which cause to determine prognosis.
From my experiences with clients, fertility will be dependent on the cause and severity of SD. You may wish to visit a geneticist to see if you have a genetic markers like E283X or HLXB9 and if so they may be able to tell you how severe.
I will be surprised if you find many women with PFFD and SD, but you will find women with spinal deformities or hip dysplasia and SD. It is always possible to have multiple causes of disabilities at birth. In fact most doctors agree that mine probably had two causes (amniotic band syndrome and unknown teratogenisis).
Pregnancy
I was born with bilateral PFFD and had an above knee amputation on the right side. I currently wear an above knee prosthesis. Both hips are dislocated, as you know, and my pelvis is slightly deformed. I have a 4-year old and am now 7 months pregnant with my second child.
I was also very curious pre-pregnancy what was going to happen. What I did was get current X-rays, prior to pregnancy, and went to a high risk OB for a pre-pregnancy evaluation (I also brought my medical records from the Shriners Hospital, where I treated as a child). The physician said I should be fine and, at the most, would need a C-section if my pelvis was not wide enough to deliver vaginally.
With the 1st pregnancy, I gained a little too much weight (try to be in good shape pre-pregnancy... it'll make a world of difference). My prosthesis quickly became uncomfortable and I was in a wheelchair for a few months. But, I did end up delivering vaginally without any problems. For this pregnancy, I was in much better shape pre-pregnancy and am still walking very well at 31 weeks. I plan on having another vaginal delivery.
Our situations may be very different as I do not know the extent of your Sacral Dysgenesis. I do have a friend that has Spina Bifida who is pregnant with her second child. Due to her condition, she had a planed C-Section and is having another soon.
Your body will do what it knows how to do. Your pregnancy may not be like your friends, but it will be your own and you will carry and deliver your child in your own way. If, for some reason, you cannot get pregnant and deliver a baby, adopt. We plan on adopting our third and last child. Being pregnant and going through childbirth is nothing compared to being a parent and loving a child. If you want to be a mother, you will find a way. Do not let anything stop you.