Before the beginning, part 2

This is the second post in a three part series: Part 1, Part 3

When we last spoke, we were waiting to find out of the cystic hygroma was going to develop in to hydrops, a potentially fatal condition for our little girl.

After five long weeks, we finally arrive to our 16 week ultrasound. The tech is doing all the ultrasound tech things, and we are waiting patiently. She makes what seems to be an offhand comment about trying to find the bladder, then says she needs to step out.

But before she can, we ask her: Hydrops? Cystic Hygroma?

Her answer: All good!

We are incredibly relieved, and yet the last time the ultrasound tech needed to step out, we got some pretty rough news, so our relief was tainted with a bit of dread.

As it turns out, that dread was warranted. While our little one had cleared her cystic hygroma hurdle, we were now hit with a huge number of new issues:

  • No bladder visible
  • No nose bone
  • Left eye orbit smaller than right
  • Part of left brain smaller than right
  • Single line umbilical

While that is a large list, the biggest issue that the doctors seemed concerned about was the bladder. While they couldn’t find it, they did note that the fluid around the baby was normal, implying that she was both taking in and excreting the way she should. They also noted a mass below the umbilical.

Diagnosis: Bladder Exstrophy

If you are new to this term, that is expected. It only effects 1 in about 40,000 births. Essentially, the bladder forms outside the body instead of in. Another way it was described is that we essentially start flat in the womb, and as we fold over, we zip up down the middle. With bladder exstrophy, the zipper gets stuck, and parts of the body form outside instead of inside.

Over the next few months we discover that because of the rarity of bladder exstrophy, the doctor at MUSC only does 3 a year on average. After some research and discussion with our local team, we decide that Boston Children’s Hospital will take care of her exstrophy, and schedule a prenatal appointment for two days before Christmas.

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