Things improved with the discussion with the doc (not my normal one). She said it looked about like it did last month. As such, it was decided to go with a 39 week induction to facilitate having a team of specialists ready. I have no interest in fighting that, especially given that it'll be January and the hospital is 45 min away. We want the best care possible and no road-side deliveries.
She was to consult with the pediatric nephrologist, and surgeon to make sure they were comfortable with the plan, and then get back with me.
I didn't hear from her yesterday, but the weather was pretty bad the last 2 days so I wasn't surprised. However, last night I checked to see if I could see the doctor's notes online yet. They always have more info than I'm given, even though I feel the normal doctor does great showing and explaining things.
Much to my surprise and devastation, her notes had some new info that she hadn't shared with me. In addition to the hydronephrosis, megaureters, and large bladder, she was unable to identify a number of spots in the abdomen and the stomach looked abnormal. This is leading to more suspicion that it isn't Prune Belly, but instead Megacystis Microcolon Intestinal Hypoperistalsis Syndrome (MMIHS).
This was mentioned at 20 weeks, and again at 32 when they noticed the excessively large bladder. But now with potential GI issues being seen via ultrasound, it seems more likely. It also explains the polyhydramnios I have (too much amniotic fluid) which is common with MMIHS but with Prune Belly too little fluid is common. That leaves the club foot as the oddity, but that can certainly be just a separate thing.
The short story of MMIHS is that the urinary text doesn't function right, same with PBS. they generally need catheters to empty the bladder. Additionally, the stomach, intestines, and colon affected and they are generally unable to consume food by mouth. Some can for a short period of time, but eventually they need a feeding tube or (most common) a central line.
It is very similar to PBS, often with the same genetic component. Both are the result of smooth muscle tissue abnormalities. The unfortunate thing is that the fatality rate is even higher. The statistics we could find were from 2012, so we hope they are outdated. However, they report an 88 percent fatality rate in the first year, with the average lifespan of 3.5 months.
Why do I share this? Because while we how to beat those odds and have Judah for a true lifetime, we want to be open and honest about the reality of the situation. Obviously, we are so hopeful for a miracle. And we will never quit praying for one. But we have to be realistic that he may never come home. And if he does, it will likely result in serious lifestyle changes for our family. Again, we likely won't have a real prognosis until he is born and we know the true extent of what we are dealing with.
So for now we wait for a consult with Children's National in downtown DC. Looking at the positives, we are in an area with truly phenomenal pediatric care options. The best in the country. We also have John Hopkins up in Baltimore, should Children's not be equipped to deal with these issues. And in terms of delivery, Walter Reed is as good as it gets, at least in terms of military Healthcare. Added bonus, TRICARE will cover this all.
If you want more info on MMIHS, I suggest starting with MMIHS.org. It's very simply and concisely explained, and even has personal stories that offer so much hope.
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