by Michelle McIntyre
When our son was born almost eighteen years ago, my husband and I asked if he would be able to father children. The answer was that he would probably have non-effectual sperm and would be infertile….however the Doctor added, almost as an afterthought, there was one man with Down syndrome who was believed to have fathered a child. To us, it did not feel like an excellent answer and we were left in a fog.
Read More
As part of Ups and Downs’ Visiting Parents Program, I have had to give that same inadequate answer to many new parents. I knew it was a poor reply but I never had anything better to add. One particular mother was more interested than most and pressed me for more concrete facts. I tried so hard to get her some better information. I called the Developmental Clinic, who had the same information as me, so they passed me on to the Genetics clinic. I still got no further than the answers that I had been given when Rowan was first born.
It was five years ago that I had tried to answer that new mother’s queries and I was left feeling frustrated. It was a thorn in my side that I never forgot. Thus, this past summer, when we were informed that our son had an inguinal hernia, I asked whether the Doctor could take a sperm sample while our son was under anesthetic for the hernia surgery. She seemed rather taken aback, especially when I said I was hoping that she could confirm that my son had ineffectual sperm so that, if he were ever sexually active, he/we would not have to worry about birth control. She explained that usually her patients’ parents were worried about the opposite; they feared anything that might make their children sterile. Despite her wide eyes at my request, she did her due diligence and found a urologist who was willing to do the procedure, which was called a testicle biopsy.
After the surgery was over, we gleaned more details about the procedure. We gathered that, while the surgical site was open, our son’s testicle was actually pulled out of his scrotum so that the urologist could stick a needle directly into it and remove a sample of the sperm. We received the lab results about six weeks after the surgery, at our hernia re-check appointment. When I started asking about the results, my son wanted to know what we were discussing. He would not have understood about biopsies or fertility issues. The clever Doctor, who knew that my son was waiting for the OK to get back to regular swimming with his club (The Dolphins), had a very good explanation for him. She said “We have found out that your swimmers are just like you, they swim really well.”
Yes, it turns out that his sperm was completely normal. Even the urologist was surprised. As an added bonus, when I studied the lab results, it appears as though the biopsy checked (and found his testicles clear) for some sort of cancer (I wondered if the cancer test was given as the excuse as to why they were actually doing the biopsy). I don’t think sperm testing is routinely done on boys/men with Down syndrome and I do have to wonder why.
There may be excellent reasons. Perhaps such tests are an ethical issue, perhaps they create added risk of infection, perhaps men with Down syndrome are expected to produce a sample cup of their semen in the regular way, or perhaps testicle biopsies are simply too expensive for the medical system. I suspect that it is not generally very easy to get such a test done so I thought I would share our results and our story. One way or another, I wanted those parents who have boys with Down syndrome to be aware that their sons may be just as fertile as our son.
Would his sperm produce children with Down syndrome? I imagine that would require further genetic testing and it was never my burning question. My main query had been answered; his sperm was alive, functional and could contribute to the formation of a new life.
How did my husband and I feel about the results? It seemed to me as though my hubbie was proud of his virile son and, I suppose I somehow felt the same. Originally, as I said, I had wanted to know that we would never have to worry about birth control but ultimately I suppose it was uplifting to hear that one more thing about our lovely boy was not dysfunctional or different. Later my husband added that he was pleased by the breaking down of one more stereotype; society had wrongly assumed that those Down syndrome boys are obviously sterile.
How does this change anything? Perhaps it doesn’t. Our son may never have a serious girlfriend or wife and he may never be sexually active. However, if he ever is, we now know that he (and/or she) will need to use birth control. Knowing that 50% of women with Down syndrome can get pregnant, I always used to believe, from a parental point of view, that it would be ideal for women with Down syndrome to get romantically involved with men with Down syndrome. In that way all parents could relax, knowing that, if/when their sons and daughters became sexually involved, there would be no fear of (unwanted) pregnancies. Now I know differently.
As an added thought, although I would never wish for my son to be a father, I have since discovered that some parents may wish for their sons to have that option available. Who am I to crush that dream?
Eighteen years ago, overwhelmed by the diagnosis of my new baby, I was buoyed by a picture on the front page of an Ups and Downs newsletter; a photo of a married couple who both had Down syndrome. The thought that my child could have a hope of getting married, carried me through many dark days. Since then, we have seen people with Down syndrome doing all kinds of things that, back then, might not have been imagined as possible; actors/actresses, models, artists, athletes, employees, employers, photographers, musicians, public speakers and the list goes on and on.
What then does the future hold for our kids with Down syndrome? None of us know and it seems that anything could be possible. My recent findings seem to support Dory’s sage advice that all that any of us can do is “just keep swimming”.
