Monday, October 19, 2009

Down Syndrome Awareness -- 31 for 21 -- Penoscrotoplasty: The Decision and The Surgery!

On a personal note, thanks to all of you for commenting and specifically expressing your interest in this topic. It is for all of you that are experiencing that sinking feeling that something is just not quite right "down there" that I am writing this story. I find the shroud of secrecy that exists regarding the male genitalia keeps such conversations out of the mainstream. For mothers of sons, we need to be able to talk about it, to confirm our suspicions and to take action... if we choose to! I've received many comments from Moms regarding their sons' penes and this problem. Some with Down syndrome and some without. So, for the record, this is not necessarily or specifically an affliction for those with Down syndrome. I've heard from 1 Mom whose son with Down syndrome outgrew the condition. I've heard from several Moms whose sons with Down syndrome did not outgrow the condition but learned to live with it... with modifications (and assistance in some cases). The choice to surgically correct may or may not have been presented to these Moms... or they may have made a choice not to surgically correct. I do not know! And, I've heard from 1 Mom who chose the path I'm on now and, though her son's recovery was difficult, she has absolutely no regrets and one year post-surgery, her now 6-year-old son has been potty trained and urinates using the stand-up method and is infection-free. Every body's child is different. Every body's journey is different. This particular saga is mine. The decisions I made were made specifically for my children. I'm telling it to get the word out and to give those who walk in my shoes -- or shoes that are similar in any way at all to mine -- that there are options. My old boss used to say, "It's all about choices!"

Part 2: Penoscrotoplasty: The Decision and The Surgery!
The Decision: I went home from the new Urologist/Surgeon thinking I would not put my sons under anaesthesia or the knife unnecessarily again. Our post-surgical Tonsillectomy/Adenoidectomy experience last March was horrendous and I did not want to risk their well being... Besides, I wasn't sure my heart could take their pain again either. But, it was their well-being that had me investigate the problem in the first place. I wasn't sure that "doing nothing" was doing anything... for them and their well-being. So, as with every tough decision put to me, I over analyzed it! I did online research. I asked everyone I know (much to the male listeners' discomfort). And I put pen to paper... writing out several pros and cons lists. In the end, with all the information I gathered, my list looked something like this:

If I do NOT correct the boys' inconspicuous penes problem through surgery NOW:


1. They don't have to undergo surgery. They suffer no pain, no risk of delay due to potential surgical/anaesthesia complications or prolonged absence from school etc.
2. They might outgrow the fat pad themselves so the surgery would have been undertaken for nothing (or would it?).


1. They undergo surgery again. Anaesthesia introduces the potential risk of brain damage and/or delay. Pretty much guarantees they will have pain, discomfort and absence from school. Worry about post-surgical recovery again (went south last time, could happen again).

2. Toileting. Cannot potty train them in a "normal" way which could make them the object of ridicule in school going forward (in diapers or toileting in a modified style). Will take longer than the extended length of time I'm already expecting AND complicates the procedure because I'd have to teach them to pull back the foreskin prior to urinating... not likely they'll ever do this given past trauma. Want them trained, if possible, for kindergarten next year. Is that possible?

3. Hygiene. Given the foreskin tearing and bleeding scene with the first Urologist, the boys won't let me touch their penes, let alone pull back the skin to clean. If I don't correct, the urologist says I have to teach them to do this themselves. NOT very likely... which means introducing irritation, infection and potentially life-long dependence on others for good hygiene.

4. They're not likely to outgrow the fat pad so this will not likely "fix itself". They will have inconspicuous penes for life.

5. Inconspicuous Penes increases the likelihood of social ridicule. Just another difference that will potentially draw negative attention to them and single (or double, I guess) them out from everybody else: Identical twins... with Down syndrome... and small penes... AND they sit backwards on the potty to urinate. Not a good forecast!

I spoke with the Sarge, listed the pros and cons as I saw them and he felt strongly that we should go forward with the surgery. I guess size does matter (LOL). I discussed it with our Early Intervention Social Worker and she posed the deciding question: If your boys did not have Down syndrome, would you correct this? The answer was ABSOLUTELY YES!

Why hadn't I thought of it that simply? The decision was made... Penoscrotoplasty!

The Surgery: The surgeon was surprised to hear from me after my less than enthusiastic demeanor with regards to the surgery upon my departure last visit. I expressed our interest in going forward and he introduced me to the surgical scheduler. She gave us a surgery date of July 7th. But, I ferreted out that the follow up included no submersion in pool water for 6 weeks. There was no way I was going to rob the fish, I mean the boys, of their summer. They LOVE the water! And since they were approved for the Extended School Year (ESY), they would miss school regardless. So, they rescheduled us for September 4th, right before Labor Day. I passed on that time frame too. I didn't want them to miss the beginning of the school year when classroom routines were set in place. So we finally agreed to Tuesday, October 13th. I was given instructions to schedule a pre-op appointment with our Pediatrician the day before surgery to receive clearance and I'd be provided with specific pre-surgery instructions and the surgery times the day before, October 12th (Columbus Day).

The summer passed quickly and we were full swing into the start of the school year when the surgery date crept up on us. I scheduled a pre-surgery consult so that the Pediatric Urologist/Surgeon could show me exactly what he planned to do. He explained that he would re-open their circumcisions to open up the foreskin, he would "clean-up" Michael's uneven circ and release the skin bridges. Then, he would pull back the foreskin and put two stitches on top on either side of the penis, and one stitch on the bottom in the center, all to hold the skin back at the base of the shaft. I also wanted to ensure that my expectations were in order with what the result was actually going to look like on the other side of this endeavor. Much to Michael's chagrin, he pulled back the foreskin and demonstrated to me that their post-surgical genitals would look like "normal" circumcised penes. Satisfied, I confirmed our appointments and went camping....

I took the kids on a long-planned weekend camping trip (camper not tent) with about 15+ of our closest friends and, wouldn't you know it, Brian came down with a mild post-Hershey Park, PA cold. I pulled both boys from school in an attempt to ensure good health for surgery and imposed a self-quarantine "no one in/no one out" rule in our home. Though I had significant doubts on Friday before the surgery, by Monday morning our trusted Pediatrician cleared the boys for surgery on Tuesday. The rest and relaxation and quarantine worked! We were finally going to get this behind us.

After receiving the "all clear" I took the kids to the petting zoo and Hay Play Yard at Atlantic Nursery and then out to lunch at Wendy's... fully expecting to receive my pre-surgical instructions and surgery times via a message on my home phone or a call to my cell phone. It didn't happen. I began calling around to the surgical center, our Pediatric Urologist/surgeon's office and the Outpatient pre-registration nurse that called on Friday to confirm the boys' names, address and other pertinent information. Each said it was the others' responsibility to inform me and that I should wait for the call. I called again and again and each time was told to wait for the call. I was massively uncomfortable when each of their offices closed at 5 and/or 6 pm and I still hadn't heard anything. I finally reached the pre-reg nurse at 7PM and she apologized saying she didn't have access to the schedule information and, "technically, the nurses have until 8PM to call you with the information!" 8PM came and went. The phone never rang. Had I gone through all of this quarantining only to be put off due to administrative mistakes? At 9PM I called the Pediatric Urologist on-call emergency number and explained that my boys were scheduled for surgery in the morning but that I had no pre-surgical instructions or surgery times. He called me back. Listened. Apologized. Gave me very high-level instructions -- Don't eat 6 hours before surgery. Apple juice and water only up to 3 hours before surgery. Then nothing -- but he did not know and could not access the surgery times. He instructed me to call the surgical center at 6AM when they opened and request the scheduled surgery times. To say I was disappointed or that I expected that doctor to handle it for me, I think, was natural. To say I was furious that I couldn't plan my night-before-surgery and keep things calm and flowing on my end. I wanted to give the boys a bath at the last possible moment knowing it'd be at least 4 days before they could bathe again. But, with all the calling around, it got late and I wasn't sure we were even scheduled for surgery at that point. I was worried that we might not be able to go forward because of their oversight. I thought if we were scheduled for the afternoon, maybe I could bathe them in the morning. No information was available to help me. So, I bathed them late Monday night... Not knowing. Having your children undergo surgery is stressful enough without being subjected to this kind of oversight. I began to worry about the competence factor. If they couldn't remember to call me, would they remember to perform the correct surgery? Fortunately, each of my guys only has one set of genitals so they couldn't amputate the wrong leg or anything like that. God help them if anything got amputated! (LOL... sorry, humor is what helps me through these situations). Between the worry and the frustration, I didn't sleep a wink that night!

At 6:30 AM I reached the surgical center and when I mentioned I'd never received the call, I was told "I think one of the nurses left you message yesterday. Sorry, we must have had the wrong phone number!" No comment. I didn't want my reaction to affect their treatment of my children. "Your boys are scheduled for surgeries at 11:30 and 12:30. [pause, muted discussion in the background] No, no wait. 10:30 and 11:30. [pause, more muted discussion in the background] No, no wait. Oh, just be here at 9:30 and DON'T LET THEM EAT OR DRINK ANYTHING!" Am I the only one having trouble understanding how to apply these instructions given the lack of information? Fortunately, the boys were still asleep so I showered, got the Old Soul off to school, got everything ready for a 9:00 am departure and then waited. They woke, dressed and we were off. No one talked about or asked for food or drink. There was no time and it wasn't allowed anyway. As a matter of circumstance, Sarge and I fasted with the boys. Seemed the right thing to do.

We were taken in quickly. Stashed in a room with a television and asked a myriad of questions regarding the boys' medical histories... 3 people firing questions at the Sarge and I at once. We discovered the admitting nurse threw away our Pediatrician's clearance papers but they were able to fish them out of the trash and get the information they needed. (Hmmm! The question of competence comes to mind again.) Our Pediatric Urologist/Surgeon stuck his head in to say hello as did the surgical RN. Two people I like and trust! And, then we met with the Anaesthesiologist. I explained the difficulties my boys had with anaesthesia in the past to which he responded, "I know Downs kids." Uh oh! He's using diagnosis-first language and he's lumping my children into a group as opposed to listening to their individual reactions to anaesthesia, surgery and pain meds. Not good. I overlook it and continue to provide the pertinent and specific-to-my-boys information that I feel he needs to know in order to do his job well and, most importantly, to keep my boys safe and healthy and alive! We're given 2 sets of mini-hospital gowns, surgical caps and non-skid socks for the boys and a one-piece suit for me. I'm on the surgery brigade and Sarge is on the recovery brigade. We're told to dress Brian first. He looks adorable in his gowns. Sarge snaps a few pics and he's called in for surgery. It is exactly 11:30 am.

It reminded me of the red carpet! Or, death row's dead-man-walking (not a good reference). Patients and employees stopped and watched him, smiling, as he passed. He's waving and saying hello. Wearing his Blueberry Beret (like Prince's song, "Raspberry Beret" but his is scrubs-blue) and everyone was commenting on how cute he is. He spotted the surgeon in a side room and waved to him too. Hit the button to open the big automatic doors into the surgery hallway and stopped dead in his tracks at the doorway of the operating room. "NO MOMMY!" I carried him in against mild resistance -- I think he knew resistance was futile -- and laid him down on the table. He'd fallen silent but his big green eyes were pleading with me and both of his hands gripped mine tightly. "It's OK, Brian." They masked him loosely and through the mask he mouthed "no Mommy" until he faded away. Eyes rolled then closed. I personally find the anaesthesia piece of surgery to be a very difficult emotional experience.... especially because I've had the unfortunate experience of putting a beloved pet to sleep. Very similar except the pet doesn't wake up. My mind replayed those past scenes with my beloved pets and my stomach did a flip. This is my baby! It'll be all right. "OK, Mommy, kiss him one more time" and I did. Then I turned toward the door. Looking back at my sleeping boy I said to the surgeon, "Good Luck" and took my leave... walking back down that hallway alone. Without my brave and confident little man in his blueberry beret.

Back in our holding cell, Michael had retreated to a hiding spot behind the big chair. He was quietly chanting, "NO! Bro! Where Bro?" I bent the television arm so he could watch Dora The Explorer from his chosen safe spot while Sarge and I chatted. The 40 minutes passed slowly... and quickly. The surgeon came in smiling with his stars and stripes do-rag and told us everything had gone smoothly. They'd be moving Brian into recovery and Daddy could join him there. "We'll be coming for Michael shortly!"

I dressed Mikey, against his will, in the gowns and had no luck keeping his blueberry beret in place. This one would NOT go quietly. I carried him through the halls which echoed with "No!" and "Bro?" and into the operating room. He fought me as I put him down on the table and, like his brother, continued to protest -- a bit more vehemently than Brian -- until the anaesthesia took effect. The final kiss. The "Good Luck" wish to the surgeon. And the lonely retreat back to our holding cell.

Not ten minutes later we were bedside to a quietly sleeping Brian. "Let him sleep!" the nurses said. Sarge ran out for a vending machine egg salad sandwich, coffee for him and Diet Coke for me. By the time he'd returned, Brian was awake. In short order, Michael joined us and though he'd been given "a little something extra" in his IV because he'd awakened so quickly after the surgery, our little fighter fought to stay awake and kept up a steady protest as the Sarge and I rotated back and forth between their beds. They drank their apple juice immediately and without repercussions... asking for 2nd and 3rd helpings. The local anaesthetic worked so well on Michael that he was under the impression the IV in his hand was the "boo boo". Unfortunately, Brian was not that lucky. In addition to the discomfort of an IV in the top of his foot, the pain in his genitals quickly became unbearable and he was given additional pain meds that delayed our departure for home. The surgeon visited and explained that the surgery went exactly as planned. No complications. The recovery nurse provided written instructions for their post-surgical care and by 3:oopm we were cleared for take off. Have you ever tried to carry a 47 lb boy without having them straddle your hip? That was one of the restrictions we were thankfully spared by bringing in our big red double stroller. We ducked out a back exit and by 3:10pm the boys were strapped in the minivan, eating Tostitos, drinking apple juice and watching Monster House on the portable DVD player. We were on our way home. Happy to be out of there. The surgery behind us... Recovery ahead!

Stay tuned. Our Recovery Story is still unfolding and it has not been without incident, unfortunately. Wednesday is our post-op follow-up appointment so I'm going to skip a few days and give you a break from all this drama. (LOL) But, I'll be back to let you all know the outcome... the good, the bad and the ugly! And oh yes, there has been some ugly stuff! And some scary stuff! (That's my series cliff-hanger!)


  1. I hope the recovery is going well! Noah has an issue down there but not sure if it is the same issue the boys had? Thanks for sharing their story! I look forward to hearing more.

  2. You like to keep us hangin huh Maggie :)

  3. Whew... I always hate that moment of sleep- it's both a relief that she's no longer afraid and intense grief. I always cry. At our hospital they let her sit on my lap for it. Kayli has has anesthesia many times- adenoids, ear tubes x 3 ?4, heart surgery. I also appreciate your description of The Decision- it is so hard. I have a similar style though!

  4. Thanks for sharing this. I feel better about Max. I can easily pull his skin back to clean it, so even though it still usually looks like it's almost inverted, it's just short.
    Wishing your little (no pun intended) guys a speedy recovery!

  5. Whew! I feel emotionally exhausted just from reading! Thanks for sharing the story of their surgeries ... and I hope the recovery is going better for them!

  6. Like to think I'm tough- with no emotions- watching your son in the hospital bed practically rips m heart apart.

  7. You don't deserve kids.

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  8. The article makes a good point, questioning the validity of any/all surgeries on a child's genitals. I am BEYOND sorry that I proceeded with the surgery. I did much research and was absolutely MISLEAD by the medical professional who advised me. And the screwed up state of insurance in the US contributed to a less-than-fully-informed decision. Ultimately, I am absolutely and irreconcilably to blame for the "pain and mutilation" you describe. Your second comment is absolutely unnecessary. I am a good mother who made a mistake. You and your cause might do better by not condemning those of us who sincerely LOOK for information but can't find it through all the propaganda and personal ATTACKS you and your kind throw out there. Education is a beautiful thing. The article was helpful, your comment was NOT!

    1. Note also that had the surgery and results been more positive, I might not feel so negatively about the option I chose. Ultimately, waiting until my sons were older, as the follow-up medical opinion and you suggest, would have been my choice. But our original surgeon did not see it, nor communicate that as a viable option.