Part 1: Your baby has Dandy-Walker Syndrome

We’ll never forget the moment our OB doctor walked in during our 6-month checkup. She told us the (routine) ultrasound showed that our unborn baby appeared to have fluid in the ventricles in their brain (also known as hydrocephalus) and we needed to see a specialist. Imagine the joy of knowing you’re going to have a baby and then hearing that something might be wrong with their brain.

It got worse….

We went to see a specialist who proceeded to do more advanced imaging tests. She walked in the room and told us something that neither of us ever expected to hear:

“Your baby has Dandy-Walker Syndrome and you should consider terminating your pregnancy.”

Dandy what?

Everything was a blur from that point on but I remember statements such as:

Your baby will be:

• “the slow aunt or uncle”
• “a burden on you and your other children”
• “institutionalized”
• “not able to feed themselves”

Effectively, we were given the worst case scenarios and no sign of hope. Our emotions ran wild and we began questioning everything. How could this happen? Did we do something to cause this? We have two healhy children, what about them? Why us?

After we had time to process our thoughts and a good amount of praying, we decided that it was our responsibility to have the baby, regardless of what the future held. God put us in this position for a reason and we needed to accept it. We started to do our research online and came across The Dandy-Walker Alliance. We began reading as much information as possible but trying to decode the various medical terms. Today, there’s much more information on the internet compared to 2010 but The Dandy-Walker Alliance was and remains a critical source of information.

A Second Opinion

We decided to get a second opinion at children’s hospital in Denver. Here we met an amazing young doctor that had some familiarity with patients who were diagnosed with Dandy-Walker and gave us a very different perspective than the prior doctor. He talked to us about patients with various ranges of symptoms and disabilities but did not paint a dire picture. For the next 3 months we had extra doctor visits, ultrasounds, and check-ups to see how baby was doing and throughout the process things checked out

His Arrival

As we drove to the hospital we knew we’d be heading to the NICU for delivery. On our way to the hospital, more thoughts and emotions flooded our brains. What would he look like? What complications is he going to have? Is he going to live through the birth? 3 months after our Dandy-Walker diagnosis our son was born. He looked “normal” to us but what was going on in that little brain of his?

Only time would tell.

Dandy-Walker brain image: Fetal Health Foundation