What is a ureter/ureterocele and how does surgery fix it?
Posted by Kaycie and Charley at 5/15/2007 8:32 PM and is filed under uncategorized 
So, I've been told/asked "What the heck is a ureter?" and "How do they do
that surgery?"
So, since I just sort of made the connection enough to put it into
understandable terms. No pun intended on anyone..I get asked by nurses and now
the sonographers if I am in the "medical field." I'm apparently very good about
educating myself on my health problems and doing everything I can as a "patient"
to make the doctors' jobs easier. I guess there are many "non-cooperative"
patients, so hearing all that made me feel a little better. But, I do NOT
expect any of our friends and family to really understand, so I'll do my best to
explain. There is a link at the bottom of each post that says "Add Comment."
If you have questions or want to leave us a note, leave it there. It will
directly email to me and I can go in and answer and post your questions. For
those looking through our posts, just click on "View Comments" and it will let
you read everyone's comments! 
Hope this helps things... With this surgery,
bed-rest is pretty much a given, so I may have a little time to do some more
updating for everyone.
Hope this helps things... With this surgery,
bed-rest is pretty much a given, so I may have a little time to do some more
updating for everyone.OKAY!! Onto the good stuff...
Reagan's Bladder Obstruction/Additonal Ureter/Ureterocele
Let's start with a visual, always works for me:
There are a couple key terms here.
Ureter, this is the tube that runs from your kidney to your bladder.
Normally, everyone has 2 kidneys and 2 ureters. One ureter per kidney that runs
straight to the bladder. Then, from your bladder, your urethra drains your
urine. In fetuses, the baby pees into their amniotic sac and then they swallow
their amniotic fluid. It sounds gross, but your urine is sterile.
Okay, so Baby A (Reagan Dawn) basically has 3 ureters. One on one kidney
and 2 on another kidney. (At least this is the "suspicion!" It could be
something else as well.) What happens is the 2nd ureter (AKA ectopic ureter,
upper pole moiety, or ureterocele) runs into an abnormal area of the bladder.
It creates it's own pocket and therefore the fluid never truly drains into the
bladder. It drains into this "abnormal pocket" and creates a cyst-like
structure inside the bladder. Now, if it didn't drain too much, it wouldn't be
a big deal. But, it can continue to drain and create a ureterocele (as you see
labeled in the picture). This is where your obstruction is "said" to be coming
from. It could be something else, but this is Dr. Q's suspicion. The
ureterocele becomes incredibly enlarged and pushes across the urethra and blocks
the bladder from draining. So, if the other kidney is functioning, it simply
isn't allowed to drain from the bladder because it is blocked from draining into
the urethra. The ureterocele and additional ureter are simply a dead-end road
that will not allow urine to exit.
Here is a link to a website that tells more about this.
Now, keep in mind, if Reagan had no obstruction, most of this would be
true. Problem is an obstruction is serious and requires intervention. Why?
Because an obstruction distends the bladder and causes the bladder to compress
the ability of other organs to form properly. Primarily, the lungs cannot
mature. Secondly, if the obstruction is not cleared before birth, it is likely
she will have complete renal failure. Of course, none of this can be verified
until she is born.
Hopefully that clears of a potential diagnosis.
Now, for the surgery
The one surgery Dr. Q was discussing with us was inserting a 13 gauge
needle into Reagan's placenta and into her bladder and inserting a stent . The
stent is a small flexible tube that allows the bladder to drain back into the
amniotic sac. Essentially, taking over the job of the urethra until she is
born. The problem is these stents tend to only last for 1 day to 4 weeks. And,
since we have a healthy twin next door, they will only stent once. Reagan could
accidentally pull it out, it could become clogged, or it could just dislodge
itself. This surgery gives a 5-7% risk of miscarriage of both girls. VERY VERY
real statistics and VERY VERY scary statistics!! So, we are NOT out of the
woods. Then, once the stent no longer works, we then again wait and see what
happens to her. We obviously have BETTER news, but the prayers NEED to
continue! She and her sister have a VERY long road. But we hope and pray for
the best.
Another type of surgery they can do is where they go in an in utero lance
the ureterocele. Dr. Q said we'd be "hard-pressed" to do this if this is her
problem, but it's risky all the same, if not more. Here is a description from
the Fetal Therapy website where Dr. Q manages the department:
LYSIS OF OBSTRUCTIVE URETEROCELE
Ureteroceles resulting in bladder outlet obstruction may be diagnosed on ultrasound by the presence of megacystis, hydroureter(s), and a membrane-like structure within the bladder. In the absence of oligohydramnios, therapy is not indicated, as this suggests that the obstruction is not complete. Treatment is indicated to prevent renal damage and pulmonary hypoplasia in cases associated with progressive development of oligohydramnios. Fetal cystoscopy allows identification of the ureterocele within the bladder. The urethra is typically dilated as a result of the obstruction. Treatment is accomplished by performing a linear lysis of the wall of the ureterocele from within the fetal bladder with a contact YAG laser fiber. The incision must involve a significant longitudinal length, to avoid resealing. As a result of the lysis, the ureterocele collapses and urethral patency is restored.
Again, a reminder, this is another surgery that can be done. Riskier than
just stenting, but would more likely solve the long-term problem until she is
born.
PLEASE PLEASE PLEASE don't stop praying for these little girls!! They have
a long road that Charley & I will fight to stay on, but it WILL be hard. We
KNOW this!! But, we know we have wonderful friends and family that will continue
to support us. All these little signs just seem like signs from God telling us
to keep moving. Maybe this is why I got Crohn's? Maybe it was my warm-up to
fight for advocacy for our little girl and her sister. Who knows, but we walk
this scary, unknown path and appreciate all the little blessings along the way.
Who would of thought we could be parents to 2 little girls!!! Please, pray God
protects them!!!!
I am so grateful that you have good news. We have been impatiently waiting to hear any more news. Our thoughts and prayers are with you, Charley and the beautiful girls.
Love, your cousin, Rene
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I really don't know where to start except to say Praise the Lord. You have had an uphill battle, and still are on the battle field but it looks like a new battlion of soldiers are arriving to help you. We will continue to keep you in our prayers and on every prayer list we hear about. God works in mighty and mysterious ways. Love you all, you know I'm here if you need me. Love, Elma
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Congratulations!!! I am so happy for you. Our prayers will continue to be with you. Have a safe trip. Love, Cheryl
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i am so thrilled for all of you
i told you god will take you the way
i have a picture of reagan and addy that i am sending to you.....bet you didnt know i had their
pics !
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Kaycie and Charley, I just knew God would allow these babies to survive. I'll continue the prayers for you and the girls. Wishing you a safe trip to Tampa. Much love, Aunt Donna
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Kaycie I'm so glad you got to hear some good news. You have been through so much with this pregnancy. I'll continue to keep you and your family in my prayers.
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Hey Kaycie/Charley,
It is obvious that the Lord is working in your lives. Stay strong and hold on to your faith throughout this procedure. You have been a long journey and the journey is obviously not over.
" God has not given us a spirit of fear , but of power and of love and of a sound mind. 2 Timothy 1:7"
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i have a question im 16 and i have been found that i have 2 Ureters the doctor say i might get surgery but i don't know.so my question is do i need surgery?will it hurt?what happens if i dont get surgery?will these affect any other major organ?
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