Thursday, December 3, 2009

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.

1 comment:

  1. my son is now 10 and I believe it's buried but have been to several specialist and urologist and says have to outgrow it also said nothing could even be considered till after puberty has had all testosterone levels checked and all other health issues I've looked into and also was recircumcised at age 5 please help

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