Sunday, March 13, 2011

A difficult journey

I am the mom of a beautiful, beautiful boy that unfortunately was born with undescended testes. After several lab tests we found out that most likely, his testes have vanished or they simply are non-functional due to non detectable testosterone and anti-mullerian levels.

He was diagnosed with hypogonadism and my husband and I were devastated, this is something you certainly don't expect and much less in your first experience as parents. I thought I did everything right. My pregnancy was very healthy, I only drank spring water, I even boiled my pasta with spring water! I took my vitamins, I did not gain weight, I quit cleaning or dying my hair to avoid chemical boy was full term, weighed 9 pounds,but his scrotum was empty. Looks like a mutation happened the last months of my pregnancy that prevented the testicles from dropping and most likely they got damaged at some point.

His penis size is what it is considered "normal" on the low side but his father and I are concerned about its growth. We heard there is a study in Philadelphia that says that if an infant with this disorder gets testosterone on his first months of life his penis will have a normal growth, because that is the way it happens in normal boys.

We went to an endocrinologist who does not agree with that, so we are going for a second opinion. We definitely want the shots since we think that dealing with an empty scrotum and shots the rest of his life are hard enough, we don't want him to be concerned about his size too.

I have to confess that I am very scared about the future, and the happiness I feel for the arrival of my baby is shadowed by this finding.

I want to find the cure!

I believe the regeneration of the testes is the solution. It is being done right now and hopefully in 10 years will be more real.

I saw this video and felt really hopeful:

I started this blog to share my experience and also to invite other people dealing with anorchia. I would like to start a web site in the near future because I want to share not only experiences but also research papers that can give us some light and guidance in this difficult and still unknown journey.