Newbie..confused mom looking for info.

[LuckyMom]

Hi, I'm glad I found this site. My third child (I have 2 other boys) was born almost 4 months ago. At first I was told he was a girl, and then the room was a little quiet and I was told that it was actually hard to tell from looking at his genitals. We were transfered to our local Children's Hospital for the next 5 days for lots of testing. At first we thought it was CAH, but in the end it was not that...but it was hard as I started calling him a girl. It was so confusing. I had never heard of ambiguous genitalia or anything related. After several days of blood & enzyme tests, an ultrasound, and an MRI the urologist decided he would like to perform surgery to see what exactly was inside. So at 5 days old our little baby had surgery. They found one streak gonad and one undescended (sp?) testicle (which was palpable from the outside). Tissue on both sides was biopsied and were both testicular tissue. So we had pretty solid evidence that our baby was a boy. The urologist also mentioned more than once that his penis was a pretty good size, however it has hypospadias and the scrotum never fused, and of course the testicles never descended. The chromosome tests came back as one x and one y but the y was irregular(??) so they did fish studies. It basically came back as an abnormal chromosome...genetic disorder (not sure if it is hereditary but don't think so). I was told that somewhere along the way there was a breakdown in development, and he only got one testicle, which in turn did not produce enough testosterone to fully make him appear male. At the time we were discharged from hospital his diagnosis was "Mixed Gonadal Dysgenesis."

At the recommendation of our doctors (who seem wonderful btw) we have booked surgery for when he is 6 months. I'm told that it will probably take at least 2 surgeries, and maybe more "tune-ups" down the road, hopefully not. It's been a very tough decision and I'm not 100% sure about it yet. I have made another appt. with the urologist & endocrinologist as I have lots of questions still for them. On one hand I think it would better to do the surgery now, but part of me wonders "what if"...what if during development something happened that made him actually more female, which of course we cannot tell at 3 months old.

So maybe this site will give me some insight....from people living with IS who had surgeries and those whose parents opted to wait for them to make a choice. Either way I intend to be very open with my son about what happened. I want him to know that our decision (whatever it may be) was the hardest thing we ever had to do. I love him to pieces and I just want him to be happy. I don't want him to hate me when he grows up. We have a very solid family and he has two older brothers who adore him.

I'd love to hear from anyone who thinks they can help me. If you made it this far thank you for listening!