A successful repair

When I sat down to write this post after a long hiatus, I couldn’t think of the right title. Among those most fitting was “Ha-lle-lu-jah”. I settled on one that’s descriptive if you’re just jumping in to this blog and included what made it possible.

A successful penoscrotal hypospadias repair:
faith, love — and an amazing surgeon

I couldn’t blog for awhile. I wanted to be confident of where we were, and that we’d stay there. When we left off we were waiting for the stream to come. And as much as we waited, and prayed, the stream didn’t eventually come. Emmett continued to strain and was increasingly unable to rest. We took a video and sent it to our surgeon. He suggested we scan his bladder to ensure he wasn’t retaining.

If you’ve ever scanned your child’s bladder, you know it’s relatively quick. They hold a wand over the bladder just long enough for a reading. Once the nurse got the reading, she began grabbing catheters and calling for a urologist. Emmett had 120 ccs in his bladder. Distended, his bladder can hold about 180 ccs. So 120 was pretty full. My husband sent me to the waiting room while he and grandma held Emmett down. Two urologists tried to catheterize him but neither could get one in.

We were sent to the hospital where we would be met by one of the urologists to catheterize him under anesthesia. If they couldn’t get a catheter in while he was under, they’d put another SP tube in.  An 8 fr catheter was successfully placed under anesthesia. When the doctor met us in the waiting room, she told us how good the repair looked and, consistent with the opinion of others who’d scoped him, said she believed the issue was inflammation at the tip. It was a few days from Thanksgiving and we left the hospital with a new catheter, and new faith that when we removed it, this would be it.

The catheter was in for 17 days. Our local urologists had decided they would no longer remove Emmett’s catheters. Understandably, since they didn’t specialize in pediatrics and were nervous going forward with our track record. We needed a state-level pediatric urologist in our court. We couldn’t be seen by OHSU Doernbecher so our pediatrician sent a referral to children’s hospitals in both Seattle and Portland. Our insurance denied the first since they won’t cover out-of-state providers, and the second declined due to the perceived complexity. Our pediatrician contacted OHSU Doernbecher and asked if they would see Emmett. Thankfully, they agreed to help.

The catheter was removed on a Wednesday. It had been in for 17 days. He was put on a few day course of Valium and back on Flowmax for a few weeks — the Valium to relax his body and the Flomax to relax his urethra. We were parked in one of the RV spots at the hospital and had planned on staying a few days to monitor him.

[This part will make you smile] Guess what happened next? Emmett made wet diapers — and kept making them. Every day or so, we’d remove the diaper and try to ‘catch a stream’, and while the first couple days weren’t picture perfect, they were good enough considering everything was brand new. On Friday his bladder was scanned at the hospital and was completely empty. It took effort for us not to get too excited; we were pretty ecstatic. We went home on Saturday with a checkup scheduled for 6 weeks. On Saturday evening, Emmett stood naked on the couch watching his favorite movie, and he peed .. a stream. A real, perfect and uninterrupted stream. He didn’t strain, push or dribble. He just stood there and peed. Can you guess what I did? I know I said I would pass out with joy, and while I nearly did, I cried (well, bawled actually), and began calling grandparents, squealing through the phone, “He peed!!! …” It was a pretty amazing moment.

Over the course of the next four weeks, Emmett perfected his stream. In fact, yesterday I watched him stand there like that classic image of two boys, side-by-side, seeing who can pee the farthest. It was rounded and strong, straight and far.  It’s amazing how something seemingly so insignificant we take for granted, like the ability to pee, can become everything.

After our checkup in two weeks we’ll start tapering off the Flowmax. Based on how amazing Emmett’s doing, we believe he’ll do great. He’s also began sleeping through the night, peacefully and in his own bed. His morning diapers are so full that they seep out into his PJs — and we couldn’t be more elated. My husband says we went from a nightmare to a dream, overnight.

Penoscrotal hypospadias repair is a complicated thing. We chose the best surgeon for our child with what ended up being a two-stage repair, with just some stubborn inflammation that healed with a beautiful blessing. Upon scoping him 4 months after the second stage, there was no scar tissue. His foreskin is in tact and its original, hooded appearance has been artfully reconstructed. There is no residual chordee, even with an erection. There’s nothing I could do to thank Dr. Snodgrass enough (and my father for gracefully helping us pay the way) for allowing our little one to pee.

 

PS. If your child has proximal hypospadias and you’d like to see our before and after pictures, just email me.

Love to you, Christina

21 Discussions on
“A successful repair”
  • Hello. I have 8 month twins who are both having the hypospadias repair on 2/12. I am wondering if I could take yo up on your offer to send pictures. I would like to prepare myself.

    Thank you for this blog. It is very helpful.
    Sue Adams

  • My name is Kindell my babies name is Silas we live in Longview tx my son has a hypospadias the whole is just in the wrong spot he pees fine. He has a surgery to fix it when he was 4 months it didn’t heal so he had another at 6 months and his streem was perfect until tonight I put him in the bath and seen he was peeing out of the new whole the dr made and his old one both. This will be his 3rd surgery if we go through with it I just am so overwhelmed and don’t know of I need to find a new sergeon or what me and my husband have been through it he’s our only child and it’s hard watch him go through surgery after surgery he’s not ever a year old yet 🙁 I just need incourragement badly I’m so tired of crying and worrying

  • We love this article and love your heart! Dr. Warren Snodgrass and Dr. Nicol Bush just opened their new practice here at PARC Urology in august of 2014. They wanted to create a center for hypospadias repair!
    Their new address is 5680 Frisco Square Blvd, Suite 2300, Frisco, TX 75034 and they have a southlake location at 731 East Southlake Blvd, Suite 130, Southlake, TX 76092. The phone number is 214-618-4405. We are planning a 5K for Hypospadias in coordination with the launch of their charity! Check it out! http://www.parcurology.com/aboutus/operation-happenis/ We would love it if you would partner with us in raising awareness!
    You are a rock star for loving your baby so much and making this site! Amazing! Thank you for what you do!

  • Thanks Whitney. We couldn’t be more grateful for the expertise of Dr. Snodgrass and Dr. Bush and for helping us through Emmett’s repair. There aren’t many replying publicly out of respect of privacy for their sons, but several families a week reach out from this contact form. There are so many out there and we feel incredibly blessed that there are experts like Dr. Snodgrass and Dr. Bush and others who can help. Thank you for what you do!

  • Hi Sue, I’m so sorry for the delay. I had an email hiccup. Absolutely. I hope the repair went well, and I will email you now.

    Thanks for reaching out. The best to you, Christina

  • Hi Kindell, I’m so sorry for the delay. I had an email hiccup on this form. I’m so sorry to hear of the complications you’ve been having with Silas’ repair. I’m not a doctor, just a mama, so you should always discuss what’s going on with your son’s docs and/or surgeons, however I will reach out to you now at your email now to see if I can help in any way from another mom’s perspective.

    Christina

  • Hello. I was just introduced to your website. Thank you for writing and documenting this process. My son was born with cordee and Pentoscrotal Hypo and he will be undergoing repair #2 this summer. Just when I think I am going through this alone, I find a web site like yours. It is very comforting to see we have the same emotions and experiences.

  • Hi Kim, I’m glad you found the blog and hopefully it’s helped in some way. I’m so surprised by how many moms I hear from every week, so you’re certainly not alone. I’ll keep you guys in my thoughts as you prepare for stage 2, and am happy to help in any way I can.

  • Hello,
    we just had our son in February and were informed minutes after birth that he had hypospadias. His involves the curvature and his urethra is just a bit down from where it should be. We were kind of rushed along to a urologist and then to schedule surgery at 6 months. The urologist feels that it will be a 1 surgery fix and while that relieved me it is still surgery. I’m nervous, scared, and just want to do what’s best for my little guy. Your site has helped me know that there are other families out there. Thank you.
    Has anyone here gone through the surgery with a son that young? If so do you feel it was the right time to do it? I have read a lot of internet stuff about guys who wish their parents would have waited and asked them. It put some doubts in my head of whether I am doing the right thing at the right time.

  • Hello Tara, I’m glad you’ve found this blog. Congratulations on your little guy and I hope you’re getting some sleep. Many surgeons feel the best time for hypospadias repair is between 6 and 18 months. My son had his stage 1 repair when he was 6 months old. While there is some rationale for waiting longer, especially with more severe cases, one benefit to performing the surgery earlier is that your son won’t be as mobile at the time of the repair, which will help when there’s a catheter in place, and of course he would be less likely to remember the surgery. I too have spoken with and read stories from men who wish their parents had waited and/or asked. I find some countries have stronger beliefs about this than others, or they happen to be more vocal or private out it. While this is a decision you’ll want to consider and weigh carefully, including who performs the repair and at what age, the severity of the hypospadias and degree of chordee often play a part in this decision; this because of how it affects normal urination or sexual functionality in the future. The only advice I can give, as a parent and not a doctor, is take your time, do your research and interview as many surgeons as you need until you’re comfortable.

    Good luck to you guys! – Christina

  • Hi,
    I just found this website and it’s so nice to not feel alone in this! My son was born with perineal hypospadias and bifid scrotum, he just had his second surgery (at 14 months) it was supposed to be a 2 step repair but the surgeon couldn’t complete the repair for fear of over stretching the tissue. It seems hypospadias is something people keep quiet and don’t talk about, it’s nice to know there’s other moms out there with me!

  • Hi Christina,

    My beautiful boy was born with a penoscrotal hypospadias. I have spent endless hours ‘googling’ and reading on the condition and am so very grateful to have come across your website. Thank you, thank you, thank you for sharing your stories and establishing this site. I have felt a little isolated since my son’s birth in that I want to keep his condition private (not shared beyond our family) yet so often feel the need to talk about the sadness, worry and concern that comes with being a ‘Hypospadias Mum.’ (Sorry – Australian spelling!!!) Your site goes a long way in helping… I am quite sure that only other mothers of hypospadias boys TRULY understand what we are going through!

    Anyway, sorry to prattle on. I just wanted to express my appreciation. Thanks again 🙂

    PS: I hope you don’t mind but may I accept your offer of sharing some photos of Emmett’s results? My boy is facing a two – three stage repair, commencing early next year. I am very anxious about many aspects but am particularly curious about the ‘final result.’ Thank you.

  • Hi Megan, I’m sorry to hear about your journey. Hypospadias can be difficult to talk about publicly but there are so many families out there that have gone through it. I’d be happy to help in any way I can.

  • Dear Nicole, it’s good to hear form you. I’m so glad you’ve found this blog helpful in some way. I can relate to your endless hours of Googling. As moms, we’ll do anything for our littles and the fear of the unknown with this one can be scary. Naturally, results vary and surgeon plays an important role, but I will email you a before and after picture. I hope that it helps. Love your beautiful boy and stay rested and well.

  • Dear Danielle, I’m so sorry to hear about your son. How is he doing now? I’m going to email now. – Christina

  • Hello, fellow Oregonian here! My son (age 2) has had two hypospadias repair surgeries. The first was the primary repair and closing of the distal opening. A new urethral opening was created, but we suffered a fistula and were left with two urethral openings. My son had his second surgery 30 days ago, and as of yesterday has not only 1 fistula, but also seam separation…so we are left with 4 holes he’s urinating out of. I am feeling hopeless, and don’t know where to turn. A 3rd surgery seems so overwhelming. Who should I consult with from here? He’s currently seeing a doctor in Eugene (we live in Salem). Should I try Dornbechers?

  • I don’t know where to start… my son’s hypospadias has plagued me for years. I chose to wait until he is older – he is 7 now and will have surgery in a few weeks. I am so worried about complications and having to go through many more surgeries. I’m worried about how it will look afterwards as well as he is really looking forward to it. How do you deal with it? I feel like am going crazy sometimes trying to weigh up what is right and when and everything. Please send me your pics, am hoping they help calm me…

  • Hi Abby, I’m sorry you’re preparing for surgery. It’s such a stressful time. How severe is your son’s hypospadias? I believe we deal with the hand we’re dealt and ultimately get and grow through it. We’re so pleased with the outcome that we find blessings in that. I’ve emailed you a before and after shot. I have some closer shots showing no residual chordee. Keep in mind that results vary from child and surgeon and please double delete these from your computer for privacy for our little one. Let me know if I can help in any way.

  • Hi Christina
    Thanks for documenting your journey on a topic not widely discussed. My 14 month old had a mild hypospadius repair 10 days ago (nothing like what you have all been through) and is peeing well. Aesthetically the tip and base look normal but there is a bulging pad in the middle…i have reassured by the surgeon that this is normal and due to swelling and fluid. How long did it take for your son to ‘look normal.’
    Thanks

  • Hi Katelyn, I’m glad you found the blog. Congrats on getting through surgery and that your son is peeing well. That alone is fantastic. Yes, there may be residual swelling and bruising. I would take pictures, watch it and followup with your surgeon. A diverticulum or pocket is more common with more proximal hypospadias. After our stage 2, the penis looked great once the catheter came out, albeit a little early, although there was some swelling and inflammation we had to get through. Speedy healing to you guys!

  • Hi Christina. Thanks a lot for sharing your journey. My son is now 10 years old and was born with severe hypospadias and chordee. He had his first surgery at 11 months and things seemed fine. We were not able to feel his one testicle and questioned the doctor. He said everything is ok and we will eventually see it. Now at age 10, he hits puberty and it was obvious that one of the testicle is missing. Also he had developed one fitsula. We went to the same doctor and he didnt even seem to care. He asked us to come back in summer in July and he will schedule the surgery after that.
    We decided to see a different doctor. He performed surgery three weeks ago Found the testicle in lower stomach, stll healthy and thankfully was able to lower it and fixed the fitsula. Ths same doctor also noticed chordee in his penis. He performed erections and penis wasn’t straight.
    Now next month, he will do stage 1 surgery where he will remove the urethra since the skin is dead. Then wait for about 12 months and then reconstruct. Its like we are starting all over. He has not been able to pee standing all these years. I hope this time we have better luck.
    I was hoping if I could give more info and updates.

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