Trisomy 13 (Patau Syndrome) Support Group

I can not say that I have gone through exactly what you have gone through.
I chose to end my pregnancy when I was 5months and told my little girl had Trisomy13. There was a voice that wondered if I should do what you did, but I realize that emotionally I could not have handled it. So, I want to let you know that I have so much respect and awe that you could make it through such an ordeal.
It has been 20 days since i last felt my baby girls kicks and it is hard to think about it. I feel lucky that I was able to have for the time I did and lucky to be able to have her blessed before she left us. I lost my dog of twelve years two days later, so I know that they are together romping around and keeping each other company.
I wish you all the best. I also wanted to let you know that the doctor told me I should not be afraid to have children. There is a less than 1%chance that you had it in the first place and the likelihood of it happening again is slim to none because your chances don't increase with each pregnancy. Although, I have to say this does little to take away my anxiety of trying again, I wanted you to know in case you didn't.
My heart goes out to you and your husband and all those that fell in love with shae.

Hi there,

Im very sorry about the loss of your little girl. I c that ur comment was posted a couple of weeks before my son was born who was diagnosed with mosaic trisomy 13 if i knew this website existed then i would've replied earlier 2 this anyway they told me when he was born that he may have this syndrome because he was born with extra digits on his hands and feet and a right diaphregmatic hernia and he had trouble breathing when he came out because of that and spent his 1st month in the Neo natal unit, went under the knife 4 his hernia @ just 3 weeks but thank god 4 that operation it made a big difference inhis breathing but what are you 2 think when you've been told right throughout ur pregnancy that ur babys alright when that whole time he wasnt The doctors told me they gotta do more tests and count the chromosomes so it was like a waiting game 4 2 weeks then they told me he was mosaic and what was 2 come in future 4 him because the life expectency 4 a full blown Trisomy 13 child is a year but they said with him that only he'll b able 2 tell us they said he may not be able 2 walk or b severely retarded and all that but you see my boy is over one now and is doing absolutely fine and moving all over the place and i give hope 2 everyone that he's proved all those doctors and that geneticist wrong who knows the syndrome may affect him when he's older or it may have just given him those extras and that hernia and i dont know how well his brains gonna function but its well developed. He aint slow, he aint stupid and he if u looked @ him u wouldnt even think he had it which shocks me because i have seen children with facial deformities and it's just not fair but they are loved no matter what but anyway i hope things have been well for you since your daughters passing & don't be afraid if you think of having more children thinking it might happen again im pregnant with my 2nd child who is due next month and he is normal. Im just glad i found this support thing 2 let people know all hope isnt lost and that it's worth holding on to.

i would like to say thank you for your comments it took me a while to read as i haven't been on DS 4 a while.
Thank you so much for your kind words but since last coming on i have some news................................we had a healthy child..........another lil girl called honor.
my chances ov having another patau child were slighty higher than most coz my husband carries the defected gene but we trusted the scans and they were rite, my lil girl was okay. cant believe it really and it was weird when she cryed at the birth coz shae didn't do that......but hay guess im the eveidence to prove life does go on.......i quit smoking sfter 11 yrs, i got married on shae's 1st birthday and im happier then ever b4. which i never thought wud happen. :)
Thank you again.
im going to still come here though coz i want to still talk to other familys with experience ov PATAU.