Diagnosed with hypospadias

My son’s hypospadias is penoscrotal. This is the severe grade and also called proximal hypospadias. We found out about it in utero at our 17 week scan. You know, the one where you go in and see your little bundle for the first time. We were so excited. Just 6 months prior we had two miscarriages, and prior to that, raised a beautiful boy and girl. At that 17 week scan, the snographer threw us for a loop when he spent much too much time analyzing the baby’s gender. He couldn’t seem to figure it out. He used words like ambiguous and stumped.  Nevertheless, we were still smitten by our little sweetheart on the screen.

Three days later, I received a call from my OB. She said she’d thought about our case for three days, and had spoken to specialists, techs and a few others doctors about what to do. Naturally, by that point I was turning white. I wasn’t aware following our scan that we were a “case”. She told me they thought the baby was a girl with congenital adrenal hyperplasia which affects 1 in 10,000 to 18,000, or something much more serious that to this day I don’t remember the name of because I almost passed out after Googling it. I was sent to a specialist where we were diagnosed with hypospadias and said we were having a boy. We were thrilled, but that rollercoaster kept on its track the rest of our pregnancy. Some doctors couldn’t see testicles, others still thought the genitalia was ambiguous.

When our baby boy was born, he was absolutely perfect. He did have severe hypospadias but I had nearly my entire pregnancy to research that, so that I could handle. I fought our insurance for 6 months for out-of-plan coverage to see Dr. Warren Snodgrass in Texas for the repair. We lost that battle, but we got on his schedule anyways with his gracious discount for no-insurance families, and the first stage repair was scheduled for when our little guy was 6 months old.

Stage 1 hypospadias repair

 

6 Discussions on
“Diagnosed with hypospadias”
  • Hi! I hope and ur boy are ok.
    I’m mother of a little boy almost 2 years old!
    He was born with hypospadias in the severe grade. He has already had 11 surgeries and has had a lot of complications.
    He looks like he has a estenosis, and I’m terrified.
    I’m from Monterrey, Mexico, and I would like to know about your doctor.

    Best!

  • Dear Karla, thank you for finding my blog and for reaching out to me. I replied also to you by email. I am so sorry to hear about your sweet boy and the complications you’ve all experienced. I believe you may be referring to meatal stenosis, or urethral stricture. Don’t be terrified, there are fantastic surgeons out there who can help your son get through this. I will wait for your reply by email. We’ll get through this together.

    Best to you, Christina

  • We have a very similar story. I am pregnant with our third child and at our 18.5 week scan (4 days before Christmas!) we also were hit with the hypospadias diagnosis. We had a blood test to confirm that it was a boy and he is. We had a follow up ultrasound at 22 weeks and they confirmed the hypospadias . They also stated that it is possibly penoscrotal as they believe they saw him urinate from the base of the penis. I haven’t been too worried since I realized there are many defects that are worse but I am due for a scheduled c- section on May 13 and am starting to get nervous again. Thank you for writing this blog it has been very helpful. I hope things continue to go well for your little guy. Laura S.

  • Hi Laura, congratulations on your little one. Yes, there are defects that are worse and there are some fantastic surgeons out there doing really great work. I’ll keep you in my prayers that all goes well as you prepare for labor.

    -Christina

  • Hi Christina,

    my son has distal hypospadias with no chordee. pls suggest me is it really necessary to do surgery for this as I came to know about lot of complications even after surgery.

  • Dear Jaya, please consult with your doctors and/or surgeons, however repairing mild hypospadias isn’t medically necessary, especially if there’s no chordee. Cases of hypospadias vary in severity – the majority are minor and do not require surgical alterations for a boy/man to live normally. Congratulations on your son, and I wish you the best in your journey.

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