Warning: If the discussion of human anatomy makes you cringe - turn back now,
Circumcision. A very private choice that parents have to make when their little fellows enter the world, To snip or not to snip was a heavy burden to bear when we learned we were having a baby boy. After much research (including advice from the American Academy of Pediatrics) we decided to keep our son's parts the way they arrived in this world.... intact.
This blog entry is not an anti-circumcision rant or anything of the sort. It is not my business what your family chose to do with your son's private parts. The point of this entry is to bring awareness because due to a disturbing event at our Nephrologist's office last week I was forced to file an official complaint with the Medical Director against the individuals involved in the story I am about to tell.
As mentioned in my previous entry, it was discovered that my son has a "horseshoe kidney" and because he has never had any issues with UTI's or his urine flow, I decided against Googling the subject, as I have the tendency to *ahem* obsess over facts and compare data and drive myself mad.
Alas, instead of going into a kidney Doctor's office to learn of what it meant for our son to have a fused internal organ we ran into several issues. First, they did not even have the records from his previous renal scan and pointlessly put him through a second scan which I found out today is not readable due to a "technical difficulty" and instead they want me to put him through a nuclear test to inject him with dye in order to check the functionality of his kidneys and to also do an MRI at the same time. Ugh. Second, we had to wait over an hour past our appointment time before we even got to see the Nurse who insisted on blowing vanilla scented bubbles at our son in an attempt to distract him from the blood pressure cuff, only he has Sensory Processing Disorder so the bubbles sent him over the edge and then they were unable to even get his blood pressure because he got some overwhelmed and upset by having wet things bursting on his skin in a scent he found appalling.
Then, the big no-no happened. The nurse informed us he'd need to have a urine bag on in order to get a urine sample. Okay - no big deal. We've done that many times ourselves and have never had an issue. Yet, for some reason she announced "I'm going to retract is foreskin" WHILE trying to forcibly retract his foreskin. I told her "NO, you do NOT do that" and she continued. I told her NO again and she continued. Then my husband stepped up beside her and repeated NO again at which point I could see by the look on my son's face that she was causing him discomfort and I had to go under her arms and smack them and her hands up and away from my son's genitals. I was LIVID.
There was no apology from her for inappropriately touching my son's genitals. She did not ask permission before doing this to him and she did not listen when I told her no. She then argued with me that she was "checking for bacteria" and threatened to catheter him "if the urine sample came back tainted". I tried explaining to her that is not something that you do to an intact foreskin and she tried telling me differently.
When we finally got to meet the specialist he immediately questioned us about not allowing the nurse to retract our son's foreskin and decided to take a look at it himself and informed us our son has phimosis, that we'd need to go see a Urologist and all because our son's foreskin does not retract. (it is normal for it not to!) What should have been an appointment meant to discuss our son's abnormal kidney became an appointment about our son's penis just because his foreskin is still attached. Our son has never had a UTI or any other issue with his
This fact is NORMAL. In fact, I even called the hospital's nursing hotline and asked for them to advise me on the proper care of the foreskin where they confirmed in fact that it should never be forcibly retracted and that by doing so they could have caused sever pain and bleeding. Had I not smacked her hands off of my son's penis she could have possibly permanently damaged his foreskin which in turn could require us to circumcised him. We were made to feel as if we had done something wrong and were informed we needed to go see a urologist because his foreskin does not fully retract over the glans.
I guess I'm just writing this because I am sure there are other parents out there who could have this happen to them. I'm writing this because I want the nurses and doctors to know that they can be liable for damages to a child if they do actually retract a child's foreskin forcibly including an assault and battery charge. Particularly when that nurse doesn't have the parent's permission to do so and especially when they don't listen to the parent or stop when told to do so.
I am TIRED of pies poor health care and doctors/nurses who aren't fully educated in their area. How can I trust a man who is a kidney specialist if he doesn't understand the basic anatomy of a natural penis? This does not compute for me or his father so we called our lovely Geneticist gal and let her know that we need a second opinion at the University Hospital instead. This requires a two hour drive and another day of lost wages for my husband due to someone else's negligence and seriously inadequate knowledge of something that should be common knowledge.
This mama is no longer taking these issues in stride. I will not stand by and hope that the "professionals" know what they are doing. So, that is that. My son is intact and I'm sure if he could talk he'd say he'd like to keep it that way. Don't ever let anyone touch your child in a way in which makes you (or your child) feel uncomfortable. Do not be afraid to say NO. Do not be afraid to remove their hands if they do not stop. Do not be afraid to inform someone's superior of their failings. People can't learn if they aren't told that they are wrong and they can't fix it if they aren't corrected. If anything... maybe this will save another little boy from a terrible and painful mistake on the part of an uneducated nurse and doctor.
My apologies for my lack in posting recently! I think all of the stress of the last year finally caught up with me and on top of being overwhelmed by appointments I managed to catch the dreaded "crud" along with Abram last week!
February and March were incredibly busy months with doctor's appointments, speciality clinics, therapies and working hard on walking with Abe. After we got the news of our son's rare genetic disorder on New Years Eve, we have basically been running the gamut of specialists to rule out the common things that go with the Chromosome deletion he has.
We were VERY lucky to hear that Abram's heart it "beautiful"!! He has no murmurs or abnormalities so when the Pediatric Cardiologist walked in and said "good news" after his EKG and Echocardiogram, my eyes filled with tears and every hair stood up on my arms. That moment was honestly the first time we've heard GOOD news from a doctor since Abram was born and for that - we are so thankful!!
In March we also found out through a renal sonogram (requested by our Geneticist) that Abram has fused kidneys. They are apparently one large organ and pushed over to one side. For now, we have no idea what that means for Abram but since he has not had any issues wetting diapers, I refused to let myself read or research anything about it. We got to see the Nephrologist (the kidney doc) this Friday where Abe will have to get another renal sonogram after which we will get to see the specialist. I am nervous to see how that will turn out but I am trying to keep calm and focus on the things I CAN do something about right now!
Abram also got his new glasses with the correct prescription and he has done so well with wearing them and keeping them on. You can tell that they really do help him and make a huge difference so I must say I am impressed with the Wolfe Eye Clinic! They made dilating Abram's eyes seem like a piece of cake and we were in and out of there in under two hours. I even think the glasses are helping immensely with Abram's mobility as well since he can see where he's going! He is now "cruising" on furniture and walls, wants to constantly walk holding mommy's fingers so tight that my fingertips turn purple and he loves his new push-behind toy that I managed to score for $8 at a Flea Market! (It's a nice ALL wood one that will be sweet with my intended makeover).
The next BIG thing after our Nephrologist appointment will be Abram's MRI to check the mass in his brain for growth. I am SO nervous about that but we have to take things one appointment at a time and one day at a time. I know I am well educated about all of my son's medical issues and all I can do now is hope that it hasn't grown.
I also have some exciting news regarding Abram's healthcare. We were booted off Medicaid on Abram's first birthday) the same day we were talking to a Skull Base Surgeon about brain surgery for our child. We made "too much" money on their scale but we did manage to qualify for Hawki. That has helped immensely but it hasn't covered everything so we have really dwindled our savings down paying out-of-pocket for things for Abram's medical expenses/necessities. We heard about the Disability Waiver and the Intellecutal Disability Waiver last summer after all of Abe's diagnoses and I immediately applied. He qualified for disability but the wait list for help is 18 months long and after two REALLY long years raising a special needs kid without a great support system has been difficult at best. After supplying an encyclopedia of information to DHS and a meeting with a psychiatrist, Abram qualified for the ID Waiver so we now officially have a case worker, Abe has his Title 19 back which will help immensely with medical expenses, we got our WIC back and we now qualify for Respite Care and Supported Community Living, which means we will finally have the ability to take a break every now and then!
Hello! My name is Erin. I am Abram's mom, a tireless advocate for UBE2A Deficiency Syndrome and a fierce proponent for medical cannabis.
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