Saturday, September 1, 2007

Sophie needs Surgery

Most of you have already received this update, but here is the story. We spent the entire day on Tuesday and Wednesday, August 21st and 22nd at Vanderbilt Children’s Hospital with Sophie. On Friday, August 17th, we noticed that one side of her labia was red and swollen, we took her to the pediatrician and he put her on antibiotics. On Monday night, August 20th, when Adam was changing her, it looked like she was passing stool from her vagina (NOT GOOD). So we went back to the pediatrician and then met with a pediatric surgeon. On Tuesday, August 21st she had a barium enema (looking for a connection between her rectum and her vagina) which was normal. We took her back on Wednesday, August 22nd for a pelvic ultrasound (looking for an enlarged uterus), which was also normal. However, we still saw what looks like stool in her vagina and we had no explanation for what we assume was an abscess in her labia. She was scheduled to have an examination under anesthesia on Friday, August 24th.
Out of desperation and hope I emailed a surgeon from Vanderbilt that is amazing. He is no longer performing surgeries, but is still doing research and working in the clinic (the same clinic where Sophie's surgeon is). I have worked with him for 9 years and have seen him perform miracles many times. I always said if I needed a surgeon I wanted him on the case. Since all our tests were coming back negative, but I was SURE of what we saw and knew there was something there I asked him to look into our case. He examined Sophie on Thursday and was able to find her fistula in 2-3 minutes flat, saving her from a procedure under anesthesia.
Sophie does have a rectovestibular (aka rectovaginal) fistula (a connection between her rectum and vagina) but a normal anus. This is EXTREMELY rare but this surgeon has seen it once before in an older child. I am grateful that Sophie has a diagnosis and a normal anus (that sounds funny, but most of these fistulas are associated with an imperforate anus (no hole on the outside) and are therefore a more complex repair). And I am so incredibly grateful that this surgeon was willing to see us and saved her from yet another procedure. He really is an amazing person and I am so thankful he is still working at Vanderbilt.
Sophie’s particular problem is virtually undocumented in the United States. Dr. Pietsch and Dr. O’Neill  (two of the VERY experienced surgeons at Vandy) have each had one patient with this, but both were older children (since this type of fistula is usually associated with trauma…having a congenital fistula makes Sophie that much more unusual). Most of the cases that have been documented were in India and Japan. Most of these cases were associated with a labial abscess just like Sophie and they aren’t sure what comes first the fistula or the abscess. It figures I would have a child with something this rare!
The plan for Tuesday, September 4th, is to perform a thorough exam under anesthesia to see how high the fistula is and to determine where it goes. Dr. Jensen is hoping to remove the fistula from below without needing to perform a colostomy. However, in the literature, 1/3 to 1/2 of the patients required a colostomy later because the fistula either recurred or the patient got an infection. If she needs a colostomy she will have it for a few months (up to 6 months) so we are really hoping to avoid this intervention. We expect to be in the hospital for 3-4 days post-op. Dr. Jensen assured me that he will not perform any intervention unless he is positive it is the right thing to do. If during the exam he finds something unexpected, he will not do any intervention until he discusses it with someone else. He also told me he wasn’t sure who he would talk to, since this is so rare, but the bottom line is that he won’t intervene until he is sure what he is doing is the right thing for Sophie. I feel confident that she is the right place with the right people! 
I think that is all for now…please keep us in your prayers for a while, even if we avoid the colostomy initially, we have to keep her infection free and let her heal before we are out of the woods. In the wise words of Sister Theresa (I think)…I know God doesn’t give us more than we can handle…I just wish he didn’t trust me so much!

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