Nathan is a Rock Star! - Part 1

Nathan Andrew Shirley is my 4 month old son who was born with Dandy Walker Variant and he's beating the odds.

I found out about his diagnosis during an anatomy scan ultrasound at one of my many prenatal visits. My doctors were immediately on the lookout for additional problems since there is a laundry list of associated disorders. I found out quickly that the more physical or genetic problems they found, the worse their outlook was for his outcome after birth.

The ultrasound had revealed that there was a small cyst forming at the base of Nate's brain, so the next step was to visually examine him with a more in-depth ultrasound to see if there were any physical defects developing.

I managed not to worry myself sick during this process and was very relieved to find out that his vital organs were all functioning properly and that he had no additional congenital defects.

We weren't finished there, though. The next step was to look for a possible cause or additional underlying genetic/chromosomal abnormalities like Trisomy 18 or Down Syndrome. I DID manage to worry myself sick during this part, but I said my prayers and managed to find my way to the designated hospital room for an amniocentesis.

Waiting for the results was excruciating, but I was AGAIN extremely relieved to find out that there were no chromosomal abnormalities.

I was fortunate enough to be able to get a more in-depth level of chromosome screening done from the same amnio fluid. This one was called called a micro-array. And for the third time, I got the best possible outcome of no abnormalities observed.

So after exhausting the medical testing that was available (I did this to help my doctors plan for his care after birth. Knowing his condition in detail helped them to know how aggressively they could and should respond to any possible concern without causing an unexpected problem due to an unkonwn condition.) I was prepared for the reality of what was to come while still optimistic about the outcome because of how many things we had ruled out.

By then, I knew that we were dealing with an isolated occurance of the variant which meant that Nathan had a chance at the best possible outcome.

He still had to get here, though, so we were watched very closely. And unfortunately, he wasn't growing as fast as they wanted. (Although we had ruled out everything major, we did also have a two-vessel umbilical cord that was not supplying enough nutrition.)

We made it to 31 weeks before the doctors started getting concerned that he was too small. By this time, the cyst had grown (as expected) and the doctors were also concerned that there may be neurological deficiencies because of the pressure that the cyst was exerting on his brain that might have been keeping his body from performing even the simple functions needed to sustain itself.

I was EXTREMELY stressed. And that was just making things worse.

I got my first steroid shot that week, and had to have it repeated the next day. That was on a Tuesday and they wanted me to return that Friday so that they could take another look at Nate (and they said to plan on getting checked out twice a week from that point on.)

By early Friday morning, something felt very wrong and I started getting sick.

Nathan was born at 32 weeks (8 weeks early) on December 12, 2008.