Background on how this all started

At 12 weeks, Kelly's doctor's office does a first-trimester screen, which includes an ultrasound and blood test, and the test results came back "abnormal," as they say. The chances of having a baby with Down Syndrome were 1 in 239 ("normal" is 1 in 270 for her age) so we had the option of doing additional testing, either an amniocentesis or a more detailed ultrasound at 20 weeks. We opted for the least invasive option (the ultrasound) and we decided to not share this news because the odds of something being wrong were so small (.4%) and we didn't think it was worth the worry. Her doctor guessed the abnormal test results were due to age and that an additional ultrasound would turn up nothing unusual.

So we had an advanced ultrasound on November 20th and unfortunately the news was not positive. The doctors noticed a bladder obstruction that caused fluid to accumulate in the baby's bladder and back up into the kidneys. This condition is called Posterior Urethral Valve (PUV) and it occurs only in males so yes, we found out the gender. An abnormal fold of tissue in the urethra blocks urine from flowing freely out of the bladder. This is an issue because amniotic fluid is mostly a baby’s urine and without fluid, a baby’s lungs won’t develop. However, at the time of this ultrasound, the amniotic fluid was still in the “normal” range so the plan was to continue monitoring the situation with ultrasounds every two weeks at the Perinatal Center in Meriter Hospital.

We had the first follow-up ultrasound on December 3rd and the news was as good as we could hope. The amniotic fluid was still in the normal range, which meant the baby’s kidneys were functioning and he was passing some urine. The ultrasound tech also noted that there was blood flow to the kidneys, another good sign.

Then, on December 5th, we had another ultrasound with a pediatric cardiologist. Sometimes, babies with this condition also have heart issues so they performed an echo cardiogram. The little dude, as we’re calling him, has a perfectly functioning heart and surrounding structure so that’s one less worry.

It was after that ultrasound that our lives really got interesting. The Perinatal Center at Meriter asked our permission to share our ultrasound results with the Fetal Care Center at the Children's Hospital in Cincinnati, a renowned facility that treats babies with defects in utero. They treat all types of conditions, from twin deformities to fetal tumors, and they see patients with PUV about once or twice a week. In contrast, the Perinatal Center in Madison sees babies with PUV once or twice a year.

The Fetal Care Center was interested in our situation because it appeared to be a complete obstruction, but the amniotic fluid level was still normal, which was unusual. We were told that Fetal Care Center would evaluate our situation with an MRI, more ultrasounds and possibly an amniocentesis to get a better sense of what was going on and what could be done. This sounded like a good option to us because we were struggling to get a sense of what the future held for little dude. So we packed our bags for Cincinnati and drove down on Tuesday December 16th. We had expecting a two-day visit that would include some most excellent chili and hopefully, some good news.

We met with the doctors and staff at the Fetal Care Center on December 17th and after reviewing our MRI and ultrasound results, they gave us the good news that things looked favorable for an “intervention.” Based on those results, and the baby’s current condition, we all decided that it would be best to stay and get the ball rolling so we had the best chance to prop up the amniotic fluid (which had dropped significantly ) and relieve the pressure on the bladder and kidneys. The next step was to confirm the baby’s kidneys were still working correctly by evaluating the quality of his urine with a series (up to three) of bladder taps. Basically, this separates babies with this condition into two groups: "good prognosis" and "poor prognosis." The babies with the good prognosis are given options for intervention, from continued monitoring to open fetal surgery. The ones with the poor prognosis are typically sent home, with little chance for survival.

Kelly and the baby had the first bladder tap that Thursday and we got the results on Friday. The news was worrisome because of the electrolyte levels. We were warned this might be the case but that did little to ease our minds. They do these tests in a sequence over 24 hour periods to let the kidneys do their thing and fill the bladder with fresh urine. So the next bladder tap was done that same day and fortunately we got the news on Saturday evening that we were in the good prognosis group and they scheduled us to get a shunt placed on Monday.

The shunt procedure happened as scheduled and it went well, although not perfectly. (Some background: The shunt is a piece of tube about 4 inches long. One end sits inside the baby's bladder and the other end hangs out of his body. To place the shunt, the doctors thread it on a needle and then insert it into the baby's bladder.) The doctors got the shunt in the baby’s bladder but then little dude started moving around so the placement was not perfect but it was working. His bladder shrunk to about the half the size and he swam in amniotic fluid again, which was the goal. The shunt does not clear the obstruction but it provides a means for urine to leave the bladder and become amniotic fluid. Once little dude is born, he will have surgery to clear the obstruction.

Kelly has been given orders to have “limited activity” for the next month. This means no picking up Evan or anything heavy, no exercise, and no housework. This is one of those recommendations that sounds great until you have to do it.

As you can guess, our Christmas was low-key. On Christmas Eve, we put up a little tree, which Evan decorated, and then we baked cookies for Santa. Although it was a quiet Christmas, we felt very blessed because we came home with a little bit of hope. The baby will have bladder and possibly renal issues but we’re feeling cautiously optimistic that we will stay in the "good prognosis" category. We feel like we’ve done everything in our power but it is now out of our hands. We are just hoping for the best.

So, what is next? Kelly has a couple of ultrasounds since we have been back and she has another one on January 2nd. We will keep you posted as things change.