I know the title sounds a bit morbid; photo journaling my son's reconstructive surgery. BUT, I have got to tell you how insane it was for me trying to google images of this surgery and finding NOTHING - no stories on similar surgeries, NOTHING.
As a parent sometimes our first source to turn to for information and reassuring photos is the internet, and for me to not be able to find anything was HARD.
I imagine there are TONS of other people who are told the same thing we were told and they should know to never just trust one doctor and always get a second opinion..I know I would find something like Ethan's story and his healing photos VERY helpful. I know I WISHED to the high heavens I would have been able to find something to ease me for it all, and there was jack!
I also think as stressed as I was, I know JUST what parents who have a little boy w/ the same defect would be going through and they'd find it resourceful to know how he healed, how the surgery went and see photos of his daily progression.
The first couple of days were icky looking the last day in particular was GROSS. But today things are really taking a turn for the best and I am so happy!! I honestly thought (as bad as it looked initially) that it would look far worse, the doctor made it out to be uglier than it was, and truth be told as he is healing I am seeing what remarkable work he REALLY did do. It is amazing to me how he could use the foreskin to regraft his penile shaft where he did not have adequate skin and it trapped everything inside. AMAZING!
All the while he had explained the procedure to me I still couldn't figure it out, it was too hard for me to wrap my head around and grasp exactly what he was saying.
I really think other parents who are facing the same nightmare we went through earlier in the year would be able to breath a sigh of relief if they saw Ethan's story and were able to compare it to their own child's and know there IS hope. I also shudder to think how many other parents were misdiagnosed and told their children had micro penis as well when it really wasn't that at all but rather a congenital buried/trapped penis. As much as I hate my pediatrician for the nightmare she put us through with a misdiagnosis, I am VERY thankful she stopped the circumsicion because the urologist told us had they done it and she hadn't stopped it the obgyn would of botched it and he'd never have a normal penis b/c he would of not had that foreskin to use as a graft to reconstruct the shaft!
I really have so much thanks to give to Dr. Bukowski, he really did great work, if you could see the before and after, it's just amazing! (granted it's not the prettiest thing during the healing process) it is just NORMAL!! I am sure there will be scaring but the best thing for me is knowing that our prayers and cries were not made in vain and that when no one else heard us, Dr. Bukowski stepped up and helped, he did perfect work and he was just a wonderful surgeon and urologist. I am greatful that Ethan was able to have this done now as opposed to later where he would remember it and or not want to do it, and I am thankful Dr. Bukowski did it before he hit any stage in his life where he would have to face the dreaded locker room scenario and not be able to explain his birth defect to his peers.
I never really cared how things looked b/c he is my son and I love him no matter what, but what I cared about and what hurt me more than anything was knowing he'd be at some point in his life wondering why he was different and if I didn't step up and force myself to argue with his pediatrician, and force myself to dial every pediatric urologist in North Carolina even though so many people wouldn't give us the time of day, I'd always hate myself for giving up.
And Dr. Bukowski I believe really was Ethan's saving grace, I am so thankful we were able to find him and that he didn't give us the cold shoulder like everyone else. I am thankful in a sense everyone else turned us away b/c of that we were able to find the best of the best and again, I really do know deep in my heart God answered my prayers when he heard my begging for Ethan not to have the micro penis condition, and begging for someone to properly diagnose his condition, and then later begging for it to be able to be treated and fixed.
This year was the worst year but it was also a year to be thankful for as well as a year to learn and grow from. Sometimes we question why we are put in certain life situations and we say we are not strong enough, but the truth is everyone is really stronger than they think they are and any situation you hate in your life could ALWAYS be worse...and I only wish his urologist and the staff knew just how much I really am thankful from the bottom of my heart for every single last thing they did for Ethan. How do you begin to thank someone for changing your son and making the correct diagnosis and treatment? I just hope they will one day know how much we appreciate all they did.
Thursday, December 3, 2009
From 11/30/2009, Ethan's Surgery
First of all, THANK YOU to everyone for your kind words and prayers. I was so nervous that the big day was finally here. It was really reassuring to hear from everyone and especially two people whose son's had a similar reconstructive surgery.
We got to UNC at 7 am and went into admissions for surgery. When we arrived to the surgery unit we waited a good 2 hours.
They took us back and Dr. Bukowski explained everything to us all over again about how he would do the partial circ. to release his trapped penis and then do a vertical incision down the shaft to release the penis where the short shaft/foreskin on the underside trapped his penis inside his body. I asked him if it was common, but more so to see how many he did b/c I heard it's a rare birth defect and he then said he's done them plenty of times. Which re assured me all the more.
The anesthesiologist (spell?) came in and had us sign paper work and he was off in no time. They put him out with a gas then gave him a spinal block and kept him under general anesthesia. After the 4 hours were up the doctor came to consult with us in the recovery area, he was SO SO SO nice. He told us not to be alarmed when we first see it bc it will be very ugly and swollen but that in a few weeks it should all heal nicely.
A little while later I was asked to come to the recovery room to see Ethan (only one parent could come and i will be damned if Doug got to go and not me, I am stingy and very protective lol).
So I got back there and felt SO bad bc he was inconsolable and crying non stop. I felt SO bad. His foot was so swollen from his iv and the first time I saw his penis after wards I kind of cringed bc it was a bloody mass:(
After a good few minutes they gave him some tylenol 3 and codone for pain and he was good and fell asleep. They were able to then put us in a discharge room afte rmonitoring his stats and Doug got to come in then. The nurse went over instructions briefly but everytime I asked a question she'd say "it doesn't really matter the doctor didn't leave this in the instructions" but I am DUMB and I WANT to know, I know CRAP about penile surgery ..sadly..
So then we discharged and when we got back to Fayetteville we picked up his script and some neosporin and went home. I got to feed him and change him (and yes, morbid as it is I took a photo of it b/c incase god forbid anytihng was to go wrong i want all documentation and all). Right now it's held up by a clear bandage that looks like tape, you can see how grossly swollen it is and you can see his Y incision stitching. I pretty much can't recognize it really right now and just will go on the doctor's word that it will look better within the following weeks. He said we cant take off the bandage for 2 days, and to keep it dry except, i don't know how it's possible when urine already got into the clear bandage :(
And no soaking baths for a week. I just now pray it all heals well.
As crappy as this whole experience has been I am THANKFUL it was not the initial diagnosis of micro penis our crappy pediatrician gave us. I am also thankful after much painful pushing I found UNC and Dr. Bukowski and I am thankful he saw Ethan when no one else would and more so that he did everything he could to fix his defect.
I'll post more later but right now I'm going to get back to watching my little guy sleeping, and again THANK YOU everyone for your words it REALLY helped with my anxiety last night and today <3
We got to UNC at 7 am and went into admissions for surgery. When we arrived to the surgery unit we waited a good 2 hours.
They took us back and Dr. Bukowski explained everything to us all over again about how he would do the partial circ. to release his trapped penis and then do a vertical incision down the shaft to release the penis where the short shaft/foreskin on the underside trapped his penis inside his body. I asked him if it was common, but more so to see how many he did b/c I heard it's a rare birth defect and he then said he's done them plenty of times. Which re assured me all the more.
The anesthesiologist (spell?) came in and had us sign paper work and he was off in no time. They put him out with a gas then gave him a spinal block and kept him under general anesthesia. After the 4 hours were up the doctor came to consult with us in the recovery area, he was SO SO SO nice. He told us not to be alarmed when we first see it bc it will be very ugly and swollen but that in a few weeks it should all heal nicely.
A little while later I was asked to come to the recovery room to see Ethan (only one parent could come and i will be damned if Doug got to go and not me, I am stingy and very protective lol).
So I got back there and felt SO bad bc he was inconsolable and crying non stop. I felt SO bad. His foot was so swollen from his iv and the first time I saw his penis after wards I kind of cringed bc it was a bloody mass:(
After a good few minutes they gave him some tylenol 3 and codone for pain and he was good and fell asleep. They were able to then put us in a discharge room afte rmonitoring his stats and Doug got to come in then. The nurse went over instructions briefly but everytime I asked a question she'd say "it doesn't really matter the doctor didn't leave this in the instructions" but I am DUMB and I WANT to know, I know CRAP about penile surgery ..sadly..
So then we discharged and when we got back to Fayetteville we picked up his script and some neosporin and went home. I got to feed him and change him (and yes, morbid as it is I took a photo of it b/c incase god forbid anytihng was to go wrong i want all documentation and all). Right now it's held up by a clear bandage that looks like tape, you can see how grossly swollen it is and you can see his Y incision stitching. I pretty much can't recognize it really right now and just will go on the doctor's word that it will look better within the following weeks. He said we cant take off the bandage for 2 days, and to keep it dry except, i don't know how it's possible when urine already got into the clear bandage :(
And no soaking baths for a week. I just now pray it all heals well.
As crappy as this whole experience has been I am THANKFUL it was not the initial diagnosis of micro penis our crappy pediatrician gave us. I am also thankful after much painful pushing I found UNC and Dr. Bukowski and I am thankful he saw Ethan when no one else would and more so that he did everything he could to fix his defect.
I'll post more later but right now I'm going to get back to watching my little guy sleeping, and again THANK YOU everyone for your words it REALLY helped with my anxiety last night and today <3
Journal Entry from 11/29/2009
UNC bound tomorrowTomorrow is the big day. And my nerves are still warped.
We will be leaving for UNC sometime around 4 am to be there by 7 at which point they will do Ethan's labs for his surgery. At 10 am he should be going under for the 4+ hour reconstructive surgery and anesthesia.
While I have faith in the doctor's and the anesthesiologists, PLEASE keep him in your prayers and thoughts. I'll be on edge all day so you know if you have any anxiety pills, slip me one? (joke..not really joking haha..)
So no food past midnight, and no liquids past 6 am. OMG it's gonna be hellish b/c he LOVES to eat hah.
Yeah, so next time you hear from me may be a couple days, my parents will have mimi for the next couple days or so.
We will be leaving for UNC sometime around 4 am to be there by 7 at which point they will do Ethan's labs for his surgery. At 10 am he should be going under for the 4+ hour reconstructive surgery and anesthesia.
While I have faith in the doctor's and the anesthesiologists, PLEASE keep him in your prayers and thoughts. I'll be on edge all day so you know if you have any anxiety pills, slip me one? (joke..not really joking haha..)
So no food past midnight, and no liquids past 6 am. OMG it's gonna be hellish b/c he LOVES to eat hah.
Yeah, so next time you hear from me may be a couple days, my parents will have mimi for the next couple days or so.
Journal Entry from 9/16/2009
So Monday, I was so excited to hear that Ethan didn't have the suspected micro penis that I really did fully fail to grasp the seriousness of the situation at hand and the new information we were presented with.Ethan for starters has congenital burried penis, not the buried penis that most boys get when they are over circ'd or when they are just 'fat down south'. His is a birth defect. The type of buried penis he has is called 'trapped or inconspicous penis'.
There are several types of this condition. Ethan's is due to his foreskin being too short to let his penis fully extend. The top part of his penis has enough foreskin.Picture the scrotum to the head of the penis. the skin that runs from scrotal area to penis tip is VERY short, and insufficient, therefor it traps his penis length INSIDE his pubic fat area. The doctor told us that even at birth he stillw ould not have been able to be circ'd due to the fact that he he will need surgery to correct it. So this is the doctors plan:He will need to do a quarter circ (b/c his foreskin is not long at all just enough to cover the head). He will then need to take the skin FROM the foreskin that is cut and use it to cover the shaft of his penis on the bottom portion (where it never fully developed).
I know it's hard to picture what I am saying and I WISH I could take a photo, but I do think that if I did that I could get in trouble (it may border on child porn, even though it's for medical purposes i feel)..I don't want to take my chances with that.So the incision will be from penis tip, down to scrotal area vertically then another incision will be made from the base of the penis (scrotal area) horizontally. They will open that up to release the penis, and then use the skin they have cut to reconstruct the skin on his shaft. (does this make sense?) I am trying to explain it to the best of my ability.
The doctor says the whole procedure will take a little over an hour.I am soooo soooo sooo nervous knowing it is more than a routine circumcision and it is actually 'plastic surgery in a sense' freaks me out. if it were up to me i'd be ignorant and let it be, but the doctor says it is now medically necessary bc if we do nothing about it the way the foreskin/under side skin of his shaft is so short it will just get worse as his penis grows and he ages it will curve down causing him pain, it will trap urine that will make the foreskin balloon out and cause uti's and other infections b/c he will not properly be able to void.In another sense I am kind of glad i DO NOT Have to make the decision at all. I personally was NEVER wanting to make the circumcison decision at all, lol pick on me if youw ill but i am a sucker for feeling bad for my son lol, i know aesthetically speaking some ppl think it's more ''appealing'' but personally i never could decide eitehr way to go for it or not, i let doug decide and he was all for it. so now that it NEEDS to be done i'm glad it wasn't my choice (stupid, i know). So now here I am trying to research all the info on this new surgery I can, b/c I am nervous about it, I am nervous about anesthesia on him, I am nervous that GOD FORBID it goes wrong and they mess his penis up I will just feel horrible. I am also hoping he has enough skin to cover the shaft when they release it from surgery.
The urologist assured me he's seen worse cases of this birth defect and that he's never had 'too little' skin to use. It still makes me nervous (and he is my son so i am entitled to feel nervous and or be a drama queen about it).I also worry about how I am going to feel after it's all done n terms of his pain management and the shock of it all. The doctor says it wont look right at first but that over months it will heal'beautifully'.So with no other choice than to have the surgery done in November, I am once again finding myself holding my breath, praying non stop and just being a mom that is worried about her little man. I could only find one link that had images of the surgery he will get (it just made me cringe to be honest). (i do plan to take my own for my own purposes before/after it is done if god forbid something does go wrong).
I do feel confident that it is being done at UNC and the urologist has been one for a long time and is a professor there - so it's at least comforting on that level.of all things, why the penis? i am thankful it's nothing more serious of course, but again, i am a mom, this is new to me and i am entitled to worry. Thanks for letting me vent:)
There are several types of this condition. Ethan's is due to his foreskin being too short to let his penis fully extend. The top part of his penis has enough foreskin.Picture the scrotum to the head of the penis. the skin that runs from scrotal area to penis tip is VERY short, and insufficient, therefor it traps his penis length INSIDE his pubic fat area. The doctor told us that even at birth he stillw ould not have been able to be circ'd due to the fact that he he will need surgery to correct it. So this is the doctors plan:He will need to do a quarter circ (b/c his foreskin is not long at all just enough to cover the head). He will then need to take the skin FROM the foreskin that is cut and use it to cover the shaft of his penis on the bottom portion (where it never fully developed).
I know it's hard to picture what I am saying and I WISH I could take a photo, but I do think that if I did that I could get in trouble (it may border on child porn, even though it's for medical purposes i feel)..I don't want to take my chances with that.So the incision will be from penis tip, down to scrotal area vertically then another incision will be made from the base of the penis (scrotal area) horizontally. They will open that up to release the penis, and then use the skin they have cut to reconstruct the skin on his shaft. (does this make sense?) I am trying to explain it to the best of my ability.
The doctor says the whole procedure will take a little over an hour.I am soooo soooo sooo nervous knowing it is more than a routine circumcision and it is actually 'plastic surgery in a sense' freaks me out. if it were up to me i'd be ignorant and let it be, but the doctor says it is now medically necessary bc if we do nothing about it the way the foreskin/under side skin of his shaft is so short it will just get worse as his penis grows and he ages it will curve down causing him pain, it will trap urine that will make the foreskin balloon out and cause uti's and other infections b/c he will not properly be able to void.In another sense I am kind of glad i DO NOT Have to make the decision at all. I personally was NEVER wanting to make the circumcison decision at all, lol pick on me if youw ill but i am a sucker for feeling bad for my son lol, i know aesthetically speaking some ppl think it's more ''appealing'' but personally i never could decide eitehr way to go for it or not, i let doug decide and he was all for it. so now that it NEEDS to be done i'm glad it wasn't my choice (stupid, i know). So now here I am trying to research all the info on this new surgery I can, b/c I am nervous about it, I am nervous about anesthesia on him, I am nervous that GOD FORBID it goes wrong and they mess his penis up I will just feel horrible. I am also hoping he has enough skin to cover the shaft when they release it from surgery.
The urologist assured me he's seen worse cases of this birth defect and that he's never had 'too little' skin to use. It still makes me nervous (and he is my son so i am entitled to feel nervous and or be a drama queen about it).I also worry about how I am going to feel after it's all done n terms of his pain management and the shock of it all. The doctor says it wont look right at first but that over months it will heal'beautifully'.So with no other choice than to have the surgery done in November, I am once again finding myself holding my breath, praying non stop and just being a mom that is worried about her little man. I could only find one link that had images of the surgery he will get (it just made me cringe to be honest). (i do plan to take my own for my own purposes before/after it is done if god forbid something does go wrong).
I do feel confident that it is being done at UNC and the urologist has been one for a long time and is a professor there - so it's at least comforting on that level.of all things, why the penis? i am thankful it's nothing more serious of course, but again, i am a mom, this is new to me and i am entitled to worry. Thanks for letting me vent:)
Time Line of Events // Our first visit with UNC urology and first sign of hope: Entry from 9/14/2009
FINALLY - ANSWERS, Ethan's UNC visit!
(skip the forward to the green text to read about today if you already have the rund own of what's been going on)...
The correct diagnosis, but first a time line of all the crap that lead to the proper diagnosis for Ethan;
11 April 09 – I go in and have the c section, a couple hours later I am brought to my room, another hour or so later I meet my son, Ethan for the first time, total love at first sight. While I am thinking my baby is perfectly healthy, the doctor’s neglected to tell me anything was ‘out of the ordinary’.
I go about my day like everything is fine, surely if something looked out of place, the pediatrician and doctors would say something right?
11 April 09 (sometime around 8 pm) – I decide I am finally moving well enough that I will go ahead and change Ethan’s diaper since everyone else has done it thus far. Only when I change his diaper I am slightly taken back. Mind you, I don’t have any son’s, so I don’t know much, but I do know his penis looks abnormally small, almost inverted if you will, it’s small enough to the point I feel the need to question it. The on call pediatrician has left for the day and so I will have to ask in the morning, I bring it up to Doug who is gung ho on circumcision and to my sister who both kind of nod. No one says anything to us still and we proceed to pay for the circumcision to be preformed the following morning.
12 April 09 – The pediatrician comes in and tells me “you’re son’s penis is small, you know?” I say, “yes, I was meaning to ask about that, what is going on and is it normal or within normalcy?” She says that she is going to say no to a circumcision b/c at this point it is too small and if they do it now they will mess it up and the skin will re adhere or they can botch it and ruin his penis entirely. I ask more about the penis (meanwhile I had done my own research that night on the laptop). She describes it as “being buried beneath the pubic fat and that he will out grow it or may not”. She says she will discuss it more with me at his next check up.
That night I research exactly what she told me and the medical term for what she described is, in fact, ‘’buried penis’’. I also come across ‘’micro penis’’ and other anomalies it could be. I think nothing more and figure if it’s buried it will be fine and she didn’t at this point micro so we are good.
15 April 09 – We go in for his out of hospital newborn check up, and I want and need to know more about is genital malformation so to speak, since she has told us she can circumcise later, but has to wait for him to fully form. I then ask for the medical definition to his penile anomaly. She says “micro penis” to which I say “the term you described to us upon discharge was “buried penis” so which is it? She says again, “micro penis”. I go home, and I cry forever, when doing research on micro penis, (you can google it if you are curious). It is a congenital birth defect in which the baby is has lacked androgen and testosterone, and in most cases there is no treatment to cure it, the boy will just have a small penis that functions but is not capable of intercourse and more and likely will make him sterile. The other option to micro penis was hormone therapy with testosterone to correct and see if it will grow, basically throwing an infant into puberty to cure the ‘micro penis’. Which isn’t a sure fire ‘fix’ to this dreaded condition.
All this time I am crying nightly, staying up late researching, beating myself up wondering what I, who never so much as took over the counter meds while pregnant, could have possibly done wrong to have a baby with this condition. I decide after my research (and learning most babies up until the early 90’s born with micro penis were gender re assigned as females *heart breaking! Who could gender re assign a baby with out knowing what they would want later?* that I will not tell anyone and keep this a secret, all the while it hurts and I can find no online support group and it kills me to not tell anyone. In the meantime I decide I trust a few people well enough to share with them, one Raven, another Cheryl and my friend Brandy on bbc. Another person I shared with b/c they had an almost similar experience but turns to find out they were lyingL
Anyway, I also learn that babies with micro penis can become hypo glycemic and are at risk for shock. Knowing this at keep pushing the pediatrician who does NOTHING.
May 2009 – I decide enough is enough and I press the pediatrician to do something, I push for referrals to a urologist, and endocrinologist who can properly diagnose my son and go from there. She tells me she will do that and weeks go by and I hear nothing. I call the ....Fayetteville.... urologist, Dr. Appel, to just get no call backs at all, and mind you he is the ONLY pediatric urologist in ....Fayetteville..... Meanwhile my pediatrician’s nurse is lying and never calls anyone for a referral. She tells me she called UNC and no one will call her back. At this point I am so distraught and stressed about my son’s general health and condition that I take it upon myself to contact UNC and get in touch with their pediatric urologist. I decide I will just cry if I call them so I write a very heart felt email and spill my heart and guts to whoever the recipient is on the other end of the link on the UNC website. I tell them how I have been given the run around in ....Fayetteville...., I tell them how I am concerned b/c babies with micro penis have other ailments. I tell them that if he has micro penis he needs hormone therapy and time is of the essence. I don’t expect a reply and go to bed upset.
The next morning – I randomly check my email and see the assistant has read my email and told me it as urgent that my son be seen to rule out micro penis and to make sure he has no other underlying health issues as a result. The earliest they can see me is September and for me to call. I call and get the BEST service I have had TO DATE for my son and get my appointment for 14 September 09. I am in debt with my kindness to them and I eagerly wait until September. Meanwhile I call my pediatrician and let her know I did what her nurse claimed to have been doing for weeks and that I made the appointment myself and that I didn’t appreciate the lies and the run around. She makes up excuses and apologizes and just tells me to keep her informed on the status until the date comes.
August 2009 – Ethan has is 4 month check up with the pediatrician and his vaccines. During the checkup she does a genital exam and tells me “his penis has grown but still appears micro” Then she pauses and pushes in the supra pubic fat pad and says, “well never mind it looks normal length when I push down but I don’t know for sure what it is, let me know when you see the urologist”. Meanwhile I just cringe and secretly hate her for putting me through this emotional distress thinking my son has a worse off condition. I hold my breath and tell her I will not make any rash decisions until the professional can tell me what it really is. I go home that night and ‘inspect’ so to say my sons nether region, I notice that in my opinion, it looks like his foreskin is short and holding it down, that half his penis is out the other half seemed stuck under everything else. I write a blog for the first time on myspace and open up what has been going on to friends and family. I feel relief that I am able to finally discuss what has been ‘’eating gilbert grape’’ since the day my son was born. I am ultimately relieved that no one is judgmental or making comments that would upset me in regard to Ethan’s possible condition.
September 2009 (today) – The big day has come, and we leave at ..6 am.. to head to UNC Chapel Hill. The campus is beautiful; the reception/sign in people are OVER THE TOP friendly, something I have yet to see in ....Fayetteville..... We wait a short while before Ethan is weighed (17.3 pounds, ack big boy at just five months). We wait a little longer and get a room. Some short time later a student comes in to ask us what is going on, I describe that we have gotten the run around from our pediatrician, that she tells us he either has micro penis or buried penis. He was extremely friendly and made us feel comfortable discussing such a delicate situation.
A little later Dr. Bukowski comes in and talks with us. He then assess’ Ethan and shows us that his ‘size’ is actually ....NORMAL..... In fact, he says as he pushes down on the area surrounding the supra pubic fat “it actually looks big”. He then tells us it is definitely not a micro and not a buried penis, but rather a term called “congenital trapped/buried penis”. He shows us the foreskin that runs from the scrotum to the penis shaft head area and says “this foreskin is shorter than it should be and creates a web which traps the penis in the foreskin making it appear abnormally small”. He then says that as Ethan ages and his penis grows it will remain trapped in the small foreskin and can cause his urine to bubble under the small foreskin and therefore it was necessary to do a circumcision. He still says that at birth we still wouldn’t have been able to do it but now that he has grown he can have it done. So he will need a circumcision to release the penis and another cutting since his foreskin is short to ensure he has enough skin to cover the shaft since when he was developing in utero his foreskin was and remained smaller than normal.
I can not begin to tell you the SIGH of relief that was for us. To know that our son does NOT have micro penis, DOES have a normal penis WILL be able to have a normal sex life/ etc, it’s just a HUGE block off of my shoulders.
The nurse came in and felt bad for us, she was SOOO nice, but ultimately I just told her we were relieved it wasn’t a micro and that we were thankful that this condition (trapped penis) is correctable. So he will need surgery to correct it and circumcision, and they have set the date for 30 November. They said that they will call us the Friday prior to give us the time since he will not be allowed to eat anything but clear liquids prior to surgery.
So with all of this relief, I am SO SO SO thankful to God it is not a micro penis, I am SO SO SO thankful that this condition is correctable. I think in hindsight, maybe we had to worry it was a worse condition after all so that when we were presented with a lesser condition we would be so thankful it wasn’t the worse case scenario that we would cope better with whatever was the underlying cause. I have to stop and think, man, how crazy though of all things to have a penile defect. HeheJ but I am so thankful, I can’t tell you how much. I think I just wanted to hug the urologist for the better news.
And I am of course going to do research on the surgery itself (since it is more than just circumcision) and find out all I can, since it scares me still to have surgery of any sort done on my son. The doctor said it is at this point medically necessary since it is not just regular penis, but trapped that it needs to be released, so he said the insurance should cover it since it is a medical necessity. *woo*
Moral of the story? Doctor’s are NOT always right, if I had NOT done my researched and pushed the issue, we would have gone on living our lives as if Ethan had a micro penis, we would have been heart broken for him and upset. Had I not been an advocate for my son and looked into things we would have never known he had a trapped penis that requires surgery and he may have gotten an infection down the road. I am SO thankful I was able to get as much info as possible on this. I am mostly thankful to UNC, the staff and Dr. Bukowski for seeing us when NO ONE would give us the time of day. Shame on the local urologist for blowing us off, and I can not thank UNC enough for taking us and making the PROPER diagnosis for my son. After all of this and the lies our pediatrician told us and the things she did to my daughter over the year, we are finally going to look for a better pediatrician who actually GIVES a damn. I understand mistakes happen and that urology is not a specialty of a pediatrician, however, she did NOTHING to look further into the matter, she did nothing when we asked for a referral and she just did not care.
If you were curious go to this link, his is the one due to short foreskin: http://www.fieldoflove.net/2008/03/what-is-hidden-penis.html
September’s are usually hard for us, but this day has been good. And I am SO thankful I can finally breathe a sigh of relief. Now I just worry about the surgery, but will update as the time comes.
(skip the forward to the green text to read about today if you already have the rund own of what's been going on)...
The correct diagnosis, but first a time line of all the crap that lead to the proper diagnosis for Ethan;
11 April 09 – I go in and have the c section, a couple hours later I am brought to my room, another hour or so later I meet my son, Ethan for the first time, total love at first sight. While I am thinking my baby is perfectly healthy, the doctor’s neglected to tell me anything was ‘out of the ordinary’.
I go about my day like everything is fine, surely if something looked out of place, the pediatrician and doctors would say something right?
11 April 09 (sometime around 8 pm) – I decide I am finally moving well enough that I will go ahead and change Ethan’s diaper since everyone else has done it thus far. Only when I change his diaper I am slightly taken back. Mind you, I don’t have any son’s, so I don’t know much, but I do know his penis looks abnormally small, almost inverted if you will, it’s small enough to the point I feel the need to question it. The on call pediatrician has left for the day and so I will have to ask in the morning, I bring it up to Doug who is gung ho on circumcision and to my sister who both kind of nod. No one says anything to us still and we proceed to pay for the circumcision to be preformed the following morning.
12 April 09 – The pediatrician comes in and tells me “you’re son’s penis is small, you know?” I say, “yes, I was meaning to ask about that, what is going on and is it normal or within normalcy?” She says that she is going to say no to a circumcision b/c at this point it is too small and if they do it now they will mess it up and the skin will re adhere or they can botch it and ruin his penis entirely. I ask more about the penis (meanwhile I had done my own research that night on the laptop). She describes it as “being buried beneath the pubic fat and that he will out grow it or may not”. She says she will discuss it more with me at his next check up.
That night I research exactly what she told me and the medical term for what she described is, in fact, ‘’buried penis’’. I also come across ‘’micro penis’’ and other anomalies it could be. I think nothing more and figure if it’s buried it will be fine and she didn’t at this point micro so we are good.
15 April 09 – We go in for his out of hospital newborn check up, and I want and need to know more about is genital malformation so to speak, since she has told us she can circumcise later, but has to wait for him to fully form. I then ask for the medical definition to his penile anomaly. She says “micro penis” to which I say “the term you described to us upon discharge was “buried penis” so which is it? She says again, “micro penis”. I go home, and I cry forever, when doing research on micro penis, (you can google it if you are curious). It is a congenital birth defect in which the baby is has lacked androgen and testosterone, and in most cases there is no treatment to cure it, the boy will just have a small penis that functions but is not capable of intercourse and more and likely will make him sterile. The other option to micro penis was hormone therapy with testosterone to correct and see if it will grow, basically throwing an infant into puberty to cure the ‘micro penis’. Which isn’t a sure fire ‘fix’ to this dreaded condition.
All this time I am crying nightly, staying up late researching, beating myself up wondering what I, who never so much as took over the counter meds while pregnant, could have possibly done wrong to have a baby with this condition. I decide after my research (and learning most babies up until the early 90’s born with micro penis were gender re assigned as females *heart breaking! Who could gender re assign a baby with out knowing what they would want later?* that I will not tell anyone and keep this a secret, all the while it hurts and I can find no online support group and it kills me to not tell anyone. In the meantime I decide I trust a few people well enough to share with them, one Raven, another Cheryl and my friend Brandy on bbc. Another person I shared with b/c they had an almost similar experience but turns to find out they were lyingL
Anyway, I also learn that babies with micro penis can become hypo glycemic and are at risk for shock. Knowing this at keep pushing the pediatrician who does NOTHING.
May 2009 – I decide enough is enough and I press the pediatrician to do something, I push for referrals to a urologist, and endocrinologist who can properly diagnose my son and go from there. She tells me she will do that and weeks go by and I hear nothing. I call the ....Fayetteville.... urologist, Dr. Appel, to just get no call backs at all, and mind you he is the ONLY pediatric urologist in ....Fayetteville..... Meanwhile my pediatrician’s nurse is lying and never calls anyone for a referral. She tells me she called UNC and no one will call her back. At this point I am so distraught and stressed about my son’s general health and condition that I take it upon myself to contact UNC and get in touch with their pediatric urologist. I decide I will just cry if I call them so I write a very heart felt email and spill my heart and guts to whoever the recipient is on the other end of the link on the UNC website. I tell them how I have been given the run around in ....Fayetteville...., I tell them how I am concerned b/c babies with micro penis have other ailments. I tell them that if he has micro penis he needs hormone therapy and time is of the essence. I don’t expect a reply and go to bed upset.
The next morning – I randomly check my email and see the assistant has read my email and told me it as urgent that my son be seen to rule out micro penis and to make sure he has no other underlying health issues as a result. The earliest they can see me is September and for me to call. I call and get the BEST service I have had TO DATE for my son and get my appointment for 14 September 09. I am in debt with my kindness to them and I eagerly wait until September. Meanwhile I call my pediatrician and let her know I did what her nurse claimed to have been doing for weeks and that I made the appointment myself and that I didn’t appreciate the lies and the run around. She makes up excuses and apologizes and just tells me to keep her informed on the status until the date comes.
August 2009 – Ethan has is 4 month check up with the pediatrician and his vaccines. During the checkup she does a genital exam and tells me “his penis has grown but still appears micro” Then she pauses and pushes in the supra pubic fat pad and says, “well never mind it looks normal length when I push down but I don’t know for sure what it is, let me know when you see the urologist”. Meanwhile I just cringe and secretly hate her for putting me through this emotional distress thinking my son has a worse off condition. I hold my breath and tell her I will not make any rash decisions until the professional can tell me what it really is. I go home that night and ‘inspect’ so to say my sons nether region, I notice that in my opinion, it looks like his foreskin is short and holding it down, that half his penis is out the other half seemed stuck under everything else. I write a blog for the first time on myspace and open up what has been going on to friends and family. I feel relief that I am able to finally discuss what has been ‘’eating gilbert grape’’ since the day my son was born. I am ultimately relieved that no one is judgmental or making comments that would upset me in regard to Ethan’s possible condition.
September 2009 (today) – The big day has come, and we leave at ..6 am.. to head to UNC Chapel Hill. The campus is beautiful; the reception/sign in people are OVER THE TOP friendly, something I have yet to see in ....Fayetteville..... We wait a short while before Ethan is weighed (17.3 pounds, ack big boy at just five months). We wait a little longer and get a room. Some short time later a student comes in to ask us what is going on, I describe that we have gotten the run around from our pediatrician, that she tells us he either has micro penis or buried penis. He was extremely friendly and made us feel comfortable discussing such a delicate situation.
A little later Dr. Bukowski comes in and talks with us. He then assess’ Ethan and shows us that his ‘size’ is actually ....NORMAL..... In fact, he says as he pushes down on the area surrounding the supra pubic fat “it actually looks big”. He then tells us it is definitely not a micro and not a buried penis, but rather a term called “congenital trapped/buried penis”. He shows us the foreskin that runs from the scrotum to the penis shaft head area and says “this foreskin is shorter than it should be and creates a web which traps the penis in the foreskin making it appear abnormally small”. He then says that as Ethan ages and his penis grows it will remain trapped in the small foreskin and can cause his urine to bubble under the small foreskin and therefore it was necessary to do a circumcision. He still says that at birth we still wouldn’t have been able to do it but now that he has grown he can have it done. So he will need a circumcision to release the penis and another cutting since his foreskin is short to ensure he has enough skin to cover the shaft since when he was developing in utero his foreskin was and remained smaller than normal.
I can not begin to tell you the SIGH of relief that was for us. To know that our son does NOT have micro penis, DOES have a normal penis WILL be able to have a normal sex life/ etc, it’s just a HUGE block off of my shoulders.
The nurse came in and felt bad for us, she was SOOO nice, but ultimately I just told her we were relieved it wasn’t a micro and that we were thankful that this condition (trapped penis) is correctable. So he will need surgery to correct it and circumcision, and they have set the date for 30 November. They said that they will call us the Friday prior to give us the time since he will not be allowed to eat anything but clear liquids prior to surgery.
So with all of this relief, I am SO SO SO thankful to God it is not a micro penis, I am SO SO SO thankful that this condition is correctable. I think in hindsight, maybe we had to worry it was a worse condition after all so that when we were presented with a lesser condition we would be so thankful it wasn’t the worse case scenario that we would cope better with whatever was the underlying cause. I have to stop and think, man, how crazy though of all things to have a penile defect. HeheJ but I am so thankful, I can’t tell you how much. I think I just wanted to hug the urologist for the better news.
And I am of course going to do research on the surgery itself (since it is more than just circumcision) and find out all I can, since it scares me still to have surgery of any sort done on my son. The doctor said it is at this point medically necessary since it is not just regular penis, but trapped that it needs to be released, so he said the insurance should cover it since it is a medical necessity. *woo*
Moral of the story? Doctor’s are NOT always right, if I had NOT done my researched and pushed the issue, we would have gone on living our lives as if Ethan had a micro penis, we would have been heart broken for him and upset. Had I not been an advocate for my son and looked into things we would have never known he had a trapped penis that requires surgery and he may have gotten an infection down the road. I am SO thankful I was able to get as much info as possible on this. I am mostly thankful to UNC, the staff and Dr. Bukowski for seeing us when NO ONE would give us the time of day. Shame on the local urologist for blowing us off, and I can not thank UNC enough for taking us and making the PROPER diagnosis for my son. After all of this and the lies our pediatrician told us and the things she did to my daughter over the year, we are finally going to look for a better pediatrician who actually GIVES a damn. I understand mistakes happen and that urology is not a specialty of a pediatrician, however, she did NOTHING to look further into the matter, she did nothing when we asked for a referral and she just did not care.
If you were curious go to this link, his is the one due to short foreskin: http://www.fieldoflove.net/2008/03/what-is-hidden-penis.html
September’s are usually hard for us, but this day has been good. And I am SO thankful I can finally breathe a sigh of relief. Now I just worry about the surgery, but will update as the time comes.
Entry from 6/25/2009
(this is an entry I wrote while we were still told he had micro penis and were having karyotype testing done, I still did not feel comfortable sharing with anyone that this is what we were told his condition was):
Monday I went to the diagnostic center for his blood work, they were doing two tests. They could not be a heel prick and had to draw from a vein.
After the FIFTH vein prick - with no luck (bleeding but no luck drawing) I said THAT'S ENOUGH!!!
Seriously did they not know what the hell they were doing? 5 pricks (two in one arm, two in the other and one in his hand and no luck?) f'ks sakes man..not working!
So they go "you can come back this afternoon"..again NO THANK YOU!! HIRE someone with experience drawing blood from babies and THEN and ONLY then will I come back. poor baby was tortured enough.
SO with that anger (and not at lab techs they were nice, i was just pissed at the situation) I drove to his pediatricians and said "look he's been pricked the blood wont come just give me a referral to the specialist already this is all unnecessary until he sees the specialist!"
She's all "okay I can do that".
Mind you last week at his vax's she said she'd get us a referral to unc or duke AFTER we got the blood work done.
Well she leaves for a while (never once asked for his name to check the file) and comes back ten min later and says "here my nurse will explain to you how the referrals work"
okaaaaaaaaay I think..
I hate this woman anyway bc she has screwed up our appointments in the past..
so she is all "i have been calling for several weeks and am waiting for them to call back"..
errr WHAT? lady I only asked LAST week for a referral are you joking me?? LIAR!! so I called her out and she's all "errr I mean today I will get one today I promise"..
So I go "okay so I will hear form you today?" and she swears up and down I will..
so i go "okay" then she says it's a local place..and I'm all "hold up the doctor told us unc or duke, so what the hell, can someone give us a straight up answer?"
STUPID so STUPID! I wanted to fire her on the spot! seriously!
So I'm like okay let me leave and calm down I am already bitchy bc she should of done this as he was in the hospital after the c section but she did not..
SOOO monday came and went, tuesday came and went, no call, I said enough is enough I call the local specialist myself, no word back..
That night I go to bed late with anxiety and worry over my sons condition and wanting to go postal on the pediatrician for not doing HER job..
So I decide to go onto unc's website and look up the specialist for my son myself..I figure it's 2 am I can't call so I just write an email and spill my heart out and literally BEG for him to see my son since I am getting the run around for the last almost 10 weeks, ENOUGH IS ENOUGH!
I didn't expect a reply, hell everyone else has given us a run for our money..
but I checked my spam folder the next morning and his assistant wrote me back told me her heart broke for us and said he should have been seen STAT as a newborn and told us the very earliest she could get us in would be 14 september..:(
She left a number and I called right away. She set it upa nd we are on a waiting list incase anyone drops off before the 14th she will pencil us in first.
THANK GOD SOMEONE HEARD OUR PRAYERS.
I don't get it, WHY WHY WHY didn't the pediatrician do this for us? why did we get lied to? why are we being given the run around like it's nothing? is it perhaps bc she KNOWS she neglected to do his newborn testing and karyotyping?!!! can she be in legal trouble for this if something happens to my son bc she didn't do the testing like the government SAYS she should for this condition?
this condition has a strict protocol to follow bc babies with this condition can go into shock and die, why didn't she do this? THANK GOD my son is okay THANK F'N GOD but man if anything happens i swear to GOD i will have her ass.
So I fully plan to call her tomorrow and be all "hey it's funny your nurse couldn't get out referral and I did in one night, maybe you need to find better staff!"
and believe me ONCE all is said and done I am TOTALLY chucking her and finding a new care provider for my children. This is absolutely ridiculous and as a parent with a child with a defect, it's stressful enough without being lied to by someone you TRUST with your child's LIFE.
I am so glad sometihng told me to email UNC and I am even more thankful they cared enough - I mean TRULY cared enough to write me back and get me the earliest apt and put me on the urgent list.
So yes, it's been no picnic and I just pray it all goes over well. I am literally at wits end with the medical staff of this shit city in NC I live in. From them losing my paper work for the c section and making me go home while my son was on fetal distress from low amniotic fluid to do a 24 hour urine all the way to them rushing the c section the next day bc they realized they screwed up...
yeah... i am NOT sue happy AT ALL, i am thankful all went well with surgery..but this time with the pediatrician, all i can say is nothing better be seriously wrong with my son that SHE should have tested for from day one. UGH.
And her answer "well your insurance bla bla bla"
My answer, LADY PLEASE i have a credit card, what the hell do you think i have a credit card for?! emergencies! MONEY should not be an object when it comes to your children's health, and the fact she said that just makes me want to scalp her even more.
I really need a chill pill. Venting is a start:)
Monday I went to the diagnostic center for his blood work, they were doing two tests. They could not be a heel prick and had to draw from a vein.
After the FIFTH vein prick - with no luck (bleeding but no luck drawing) I said THAT'S ENOUGH!!!
Seriously did they not know what the hell they were doing? 5 pricks (two in one arm, two in the other and one in his hand and no luck?) f'ks sakes man..not working!
So they go "you can come back this afternoon"..again NO THANK YOU!! HIRE someone with experience drawing blood from babies and THEN and ONLY then will I come back. poor baby was tortured enough.
SO with that anger (and not at lab techs they were nice, i was just pissed at the situation) I drove to his pediatricians and said "look he's been pricked the blood wont come just give me a referral to the specialist already this is all unnecessary until he sees the specialist!"
She's all "okay I can do that".
Mind you last week at his vax's she said she'd get us a referral to unc or duke AFTER we got the blood work done.
Well she leaves for a while (never once asked for his name to check the file) and comes back ten min later and says "here my nurse will explain to you how the referrals work"
okaaaaaaaaay I think..
I hate this woman anyway bc she has screwed up our appointments in the past..
so she is all "i have been calling for several weeks and am waiting for them to call back"..
errr WHAT? lady I only asked LAST week for a referral are you joking me?? LIAR!! so I called her out and she's all "errr I mean today I will get one today I promise"..
So I go "okay so I will hear form you today?" and she swears up and down I will..
so i go "okay" then she says it's a local place..and I'm all "hold up the doctor told us unc or duke, so what the hell, can someone give us a straight up answer?"
STUPID so STUPID! I wanted to fire her on the spot! seriously!
So I'm like okay let me leave and calm down I am already bitchy bc she should of done this as he was in the hospital after the c section but she did not..
SOOO monday came and went, tuesday came and went, no call, I said enough is enough I call the local specialist myself, no word back..
That night I go to bed late with anxiety and worry over my sons condition and wanting to go postal on the pediatrician for not doing HER job..
So I decide to go onto unc's website and look up the specialist for my son myself..I figure it's 2 am I can't call so I just write an email and spill my heart out and literally BEG for him to see my son since I am getting the run around for the last almost 10 weeks, ENOUGH IS ENOUGH!
I didn't expect a reply, hell everyone else has given us a run for our money..
but I checked my spam folder the next morning and his assistant wrote me back told me her heart broke for us and said he should have been seen STAT as a newborn and told us the very earliest she could get us in would be 14 september..:(
She left a number and I called right away. She set it upa nd we are on a waiting list incase anyone drops off before the 14th she will pencil us in first.
THANK GOD SOMEONE HEARD OUR PRAYERS.
I don't get it, WHY WHY WHY didn't the pediatrician do this for us? why did we get lied to? why are we being given the run around like it's nothing? is it perhaps bc she KNOWS she neglected to do his newborn testing and karyotyping?!!! can she be in legal trouble for this if something happens to my son bc she didn't do the testing like the government SAYS she should for this condition?
this condition has a strict protocol to follow bc babies with this condition can go into shock and die, why didn't she do this? THANK GOD my son is okay THANK F'N GOD but man if anything happens i swear to GOD i will have her ass.
So I fully plan to call her tomorrow and be all "hey it's funny your nurse couldn't get out referral and I did in one night, maybe you need to find better staff!"
and believe me ONCE all is said and done I am TOTALLY chucking her and finding a new care provider for my children. This is absolutely ridiculous and as a parent with a child with a defect, it's stressful enough without being lied to by someone you TRUST with your child's LIFE.
I am so glad sometihng told me to email UNC and I am even more thankful they cared enough - I mean TRULY cared enough to write me back and get me the earliest apt and put me on the urgent list.
So yes, it's been no picnic and I just pray it all goes over well. I am literally at wits end with the medical staff of this shit city in NC I live in. From them losing my paper work for the c section and making me go home while my son was on fetal distress from low amniotic fluid to do a 24 hour urine all the way to them rushing the c section the next day bc they realized they screwed up...
yeah... i am NOT sue happy AT ALL, i am thankful all went well with surgery..but this time with the pediatrician, all i can say is nothing better be seriously wrong with my son that SHE should have tested for from day one. UGH.
And her answer "well your insurance bla bla bla"
My answer, LADY PLEASE i have a credit card, what the hell do you think i have a credit card for?! emergencies! MONEY should not be an object when it comes to your children's health, and the fact she said that just makes me want to scalp her even more.
I really need a chill pill. Venting is a start:)
Journal Entry from 6/17/2009
Well, after Ethan's 2 month checkup I pressed the pediatrician to refer me to a specialist (since she does not seem to know what'sup with his condition) She gives me one medical term but describes it as a completely different medical condition.
When I pulled my own researched I called her out on it and she was kind of..taken back? With that she told me she would give us a referal to Duke or UNC.
And then Monday we have our labs. Everything so far looks fine, but with the labs we will be able to get our referal and then make our drive and stay at Duke or UNC.
I have confidence in all the research that things WILL be fine and the specialist WILL fix everything.
When I pulled my own researched I called her out on it and she was kind of..taken back? With that she told me she would give us a referal to Duke or UNC.
And then Monday we have our labs. Everything so far looks fine, but with the labs we will be able to get our referal and then make our drive and stay at Duke or UNC.
I have confidence in all the research that things WILL be fine and the specialist WILL fix everything.
Let's start from the beginning
I decided to start this journal to help others whose babies have also been misdiagnosed as having a micro penis when infact they had another condition; a congenital buried / trapped penis. Our son's condition is congenital, meaning it was like this at birth, not from circumsicion. I will share with you our heartbreaking journey that turned into the best news and share with you everything in between. There is literally nothing on the internet about the surgery to correct congenital buried penis, much less photos, so this will really help parents of children with this same conditon. I only wish this information was available to me initially, we went through a lot to get to where our son is now and he is currently recovering from reconstructive penile surgery as I write this. Please take the time to look at the blogs and photos and if you have any questions ASK AWAY, I know how hard it is to be given this news and know nothing about what steps to take to fix this defect, if I can help one parent from the same agony we went through, I am more than happy to help!
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