“Your baby’s not normal.”

It’s not exactly the words that first-time expectant parents want to hear at 8am on a Tuesday morning during what should have been just a routine ultrasound. But that’s what the radiologist said with no more bedside manner than that of a butcher.

It’s been 141 days since I heard those words and they still ring shrilly in my ears. Here’s the short version of our story.

At our first appointment (9ish weeks) where they listen for the baby’s heartbeat, it wasn’t heard, but there was no need to panic. We were to go for an ultrasound the next day where they would just confirm viability. And we weren’t worried. There could be a million reasons why the heartbeat wasn’t picked up.

The next morning, the heartbeat was there! But the radiologist also told us about something else that was there—a fluid buildup on our baby’s neck.

Initially there were a lot of questions, tears and prayers. Let’s also put out there that Dr. Google is no longer covered by our insurance. (That’s also why there are no links in this post… don’t go searching. Just don’t.)

What the ultrasound showed was a septated cystic hygroma. It’s a pocket of fluid on the back of the baby’s neck that can sometimes be life-threatening in utero. We are fortunate ours was not fatal. It’s also extremely rare. We’re talking 1% (or less) of pregnancies. That’s like a 1 in 6,000 chance or something. So, unless you know more than 6,000 pregnant women, it’s not surprising that you haven’t heard of it.

There can be many causes of cystic hygromas, about 50% of the time they appear because of chromosomal disorders. We did some initial blood work (10 weeks) that came back negative for some common disorders. We chose not to do any further DNA testing (14 weeks) because it would not affect the management of our pregnancy. (Even if we found out about a certain disorder, there’s not much we can actively do, except worry, until the baby arrives.) We have continued with regular ultrasounds and we had an echocardiogram (20 weeks) as some cystic hygromas are associated with heart defects.

At this point we know that our baby has a bilateral SVC (20 weeks). (Everyone has a right SVC and our doctor said that as much as 20% of the population could have an extra left SVC and just not know it.) It’s not a problem on it’s own unless a person needs bypass surgery later in life.

At this point we know that the cystic hygroma has resolved or (that the nuchal translucency) is no longer larger than normal (24 weeks). We also had an MRI and a second echocardiogram done around this time that showed no further heart anomalies and what the doctor’s called a “boring*” looking brain.

At this point we know way more about fetal diagnoses and ultrasounds and echocardiograms than we ever wanted to know. (see weeks 9 – present) We still have a few more extra ultrasounds and appointments to get through, but we’re keeping a positive outlook.

And at this point (30 weeks) we know September will be here faster than we could imagine.

So readers, I’m sharing this here not because we want your sympathy, but because writing about difficult things helps me process them. Because writing this here might help some other young family that’s in a similar situation.

One thing you may not know is that I am a religious and spiritual person. And I believe that the prayers we’ve made and those made on our behalf have helped strengthen us and our baby. So thank you for the prayers thus far and if you have any more prayers or positive thoughts you want to send our way, we will certainly take them.

Sorry for all the words. But thank you for reading and being part of our family’s journey.

*Boring has never looked better.

PS… I’m not a doctor, so my stats or explanations are not exactly scientific. This is just my version of what we’ve gone through. If you are in a similar situation, please speak to a doctor or counselor.