HELLO, NORAH.

THOUGH SHE BE BUT LITTLE, SHE IS FIERCE.

#1 // It's a girl... and we're concerned.

Joanna ZuidemaComment

I was 22 weeks pregnant and it was time for our very first ultrasound. We were giddy going into it, betting on whose guess would be right. I was set on girl, Lane on boy (he later admitted that he honestly felt it was a girl the entire time, but just enjoyed teasing me with his stubborn boy-only stance). 

My itty-bitty bump at 20 weeks!

My itty-bitty bump at 20 weeks!

We arrived at the birth center (yes, a midwife-led, drug-free, natural-mama birth was my goal) and settled into the ultrasound. The tech was quickly ready to tell us the gender, "You have a textbook girl!"

After the initial burst of joy and excitement faded, the room fell quiet for a while as the tech continued the scan. This being our 'first rodeo’, we were oblivious to the possibility of anything being less than perfect. 

When the tech finally broke the silence, her next few words were deafening.

"I see some things I don't like."

The tech listed her concerns - a hole in the heart, small measurements, and not being able to get a good picture of her brain (because our little girl was moving so much). Because of what she saw, she sent our ultrasound to Dr. C, the man who started the birth center and also happened to be a top perinatal physician (a.k.a maternal-fetal medicine doctor, a.k.a high-risk pregnancy specialist) – for further review. In the meantime, we were to go home and a midwife would call us with further information. 

"Try not to lose any sleep over this."

Right.

NorahScan.jpg

As soon as we made it to the car, I completely broke down. There’s nothing quite like the all-consuming, full-body response you have when you're told there is something potentially devastatingly wrong with your child. Being a first-time mom, the intense, innate love for this little life was overwhelming and caught me off guard. Just as my body was growing this little being without much real input from me, I had also already been forming an incredibly strong bond.

Once we got home, the midwife called. I have never wanted a phone call to end so badly.

The midwife listed what the tech told us and some additional concerns – concerns with the development of our daughter’s central nervous system, concerns with her umbilical cord, and the fact that to top it off, all of these anomalies were markers for a chromosomal disorder called Trisomy 13.

As soon the words ‘chromosomal disorder’ came out of the midwife's mouth, Lane’s head dropped. His parents had lost two sons to an extremely rare chromosomal issue. Lane is adopted, but he didn't need it running in his veins in order to have an immediate understanding of the gravity of the situation.

(My super-brief, absolutely non-medical explanation – A Trisomy happens when, instead of the standard pairs of chromosomes, you have a set that is not a pair but has three. Down’s Syndrome is Trisomy 21, meaning the 21st set has three instead of two. Trisomy 18 and 13 are two other common, but much more severe, types.)

We came to understand that babies with Trisomy 13, if they survive to birth, don’t survive long afterwards (less than a week in many cases), and those that do survive can have a difficult life. (I’ve since come to learn that many, MANY babies beat these odds – this was just our initial understanding.)

Dr. C would call us the next day to set up a follow-up ultrasound with him to go over the findings.

Again, “Try not to lose any sleep.”

Not only did our baby girl have multiple abnormalities, she also (as far as we knew at the time) wasn’t expected to live past a week.

Sleep?
Right.

 

That was the hardest night of our lives.

Thank God for mornings.

 

Continue the story – #2 // Better than 50%