Heather and her husband Dan’s introduction to the congenital birth defect, hypospadias, happened at the birth of their first-born child, Michael. “Dr. Dean identified that Michael had hypospadias in that initial inspection when he was born,” Dan explains.
What is hypospadias?
Hypospadias is a congenital birth defect where the opening for the urethra is on the underside of the penis rather than at the tip. It affects 1 in every 200 babies born and is considered a common birth defect.
“It was only when he peed in the bath tub that I noticed the bifid urine stream.” Heather explains, but at 3 months Michael’s pediatrician confirmed that Michael would need surgery and at the time the only option was to travel to a pediatric urologist in Phoenix. Today, this surgery can be performed in Tucson by a pediatric urologist, Dr. Richard Ashley, at TMC for Children.
How is hypospadias treated?
At 6 months old Michael and his family traveled up to Phoenix Children’s where Dr. Argueso, the pediatric urologist closest at the time, performed the surgery.
Heather and Dan explain that the surgeon used a piece of foreskin to form a tube extending the urethra to open at the tip of the penis. The new tube was shaped/grafted around a catheter (tube) in the urethra and the catheter was kept in the penis for two weeks. As Heather explains with the follow-up care, the practicalities of taking care of a 6-month0-old with a catheter begin to sink in, “The nurses set up a double diaper system. ” Michael’s penis was bound in bandages that couldn’t come off for two weeks and the urine was deposited in the outer diaper by a tube, but the inner diaper contained his feces. “We just had to wipe as best we could, but if some got on the bandage all we could do is try to wipe it off. We couldn’t change the bandage. At two weeks it looked awful” But the post-op removal of the bandage demonstrated how well the bandaging and double diapering system had worked, as the surgery area was pristine. “There was the uncertainty of how I was going to take care of the situation,” as any first time mother or parent can empathize with. Heather reflects, “Like any issue, it seems huge and then when you get on with it and get to the other side, you realize it wasn’t as bad as you thought it would be.”
For seven years the grafted tube that formed Michael’s urethra did its job splendidly, and then Heather and Dan noticed that Michael was pulling at his underwear, and he seemed to be leaking. There was another hole at the base of his penis. Michael appeared oblivious to the idea that the two holes were not completely normal. Over some time it had become normal to him. Michael, a bright, confident little boy, just took it all in stride, but it was time to head back to the urologist. Dr. Ashley explained to Heather and Dan that in 30-40 percent of repair surgeries there is some failure. It was remarkable that Michael had made it to 7 years of age without issue. The grafted tube that had served as Michael’s urethra had healed too small and the pressure of urine stream had finally caught up. Michael has had some initial surgeries and will be back this summer for the final surgery. While Michael is thankfully unabashed in describing what the issue is, Dan and Heather report that others are less than willing to talk about this common birth defect. The secrecy and shame that surround hypospadias isolate those afflicted and their families and stand in the way of treatment and recovery. By sharing Michael, Heather and Dan’s story we hope to reach those who are feeling isolated and alone. You are not alone.
January is Birth Defects Awareness Month. Birth defects can be the result of many factors often beyond the control of the mother and yet, as Heather did, many women will wonder, “Was it my fault? What did I do wrong?” In fact, they might have done everything right; it just is. Heather reflects, “When you think about the human body, it is miraculous…As babies are growing in utero, each cell developing to do a specific function, it’s amazing that so much goes right. This was just one little thing that went wrong…It’s not hurting him, it’s not life threatening. Yes, it’s scary, but when you don’t have a choice you can make it through all kinds of things.”
How can I reduce the chance of birth defects?
While the cause and prevention of hypospadias are unsure, there are a number of ways that women can reduce the chance of birth defects by following these basic health guidelines throughout our reproductive years:
Take 400mcg of folic acid daily from the beginning of menstruation through menopause.
Eat a healthy diet and aim for a healthy weight.
Keep diabetes under control.
Get a medical checkup before pregnancy and address specific health issues including weight control, control of diabetes, and any medications taken.
Stop smoking and avoid second-hand smoke.
Stop drinking alcohol prior to pregnancy or as soon in pregnancy as possible.
Do not take illegal drugs.
Plan carefully. Use contraception if taking medications that increase the risk for birth defects.