Posted at: 09/19/2013 4:52 PM
Updated at: 09/19/2013 5:53 PM
By: Benita Zahn
39-year-old Terra Vandervoort is lucky in so many ways. Her folks and most of her family live nearby in Troy.
And after years of being unable to conceive, she and her significant other, Chris Berghela are proud parents of Christopher who's almost 2 and they're about to have their second child, a little girl they'll name Sonny Ann. But this is where, some might say, their luck ran out.
"Well, at 12 weeks I had a blood test called harmony and it tests for chromosomal defects" explains Terra.
The results were heartbreaking. Sonny Ann has Trisomy 18. It brings devastating consequences including heart and brain deformities.
Fewer than 10% of the babies who survive to birth will see their first birthday.
"I have to go day by day or I won't get through it".
Girls tend to do better than boys and some have survived into their 30's but with grave developmental difficulties.
Although many parents terminate the pregnancy when they get the news, Terra and Chris, after genetic counseling and much research, made a different decision.
" I've had people say why didn't she just terminate. I think because of my history, not being able to have children and understanding what a gift they are, understanding that I already, I was 12 weeks pregnant, I, already by the amnio I was 17 weeks pregnant. I'd already felt her move. I'd been given an imperfect child and I wasn't going to trade her in for a more perfect model and that's all there was to it" Terra explains.
The genetic counselor told them to reach out for support and one of Terra's friends at work jumped in, creating team Sonny - raising money to help if Sonny survives as she'll need extensive medical support.
If not, the funds will pay for a funeral and be donated to others coping with Trisomy 18.
And that's why Terra wants to share her story, so no other family who gets this diagnosis will feel like they're alone.
" As of right now she's been nothing but a joy helping so many people learn about strength and courage. I know for me, she's taught me about faith and hope. "
Terra and Chris are working with the pediatric palliative care program at Albany Med to insure the best care for Sonny.