[WARNING: This is gonna be long. There's just no other way to tell the girls' story!]
I am Gwen, wife to Scott, mom to Cal (age 17), Claire (age 14) & Lola (age 9). We also have two whippets named Romeo & Cash. Cash just so happens to be Lola's bestie! Search #CashandLola on Instagram for pics of these two (My handle is @gwennieh over there). We live in Kansas, U.S.A. Most people are curious about the girls, and I hope this post will help answer some of your questions.
Obviously since we had Cal first & he is typical, we were unaware that there was any genetic risks associated with having more children. We had a normal sonogram with Claire when I was 19 weeks pregnant. Everything was right on track, and they didn't schedule any further sonograms. She was born at term, and she weighed 6 lb. 12 oz. The first comment I made was, "You forget how tiny their little heads are!" Doctors were rushed into the delivery room to examine our baby girl, whose Apgar scores were 9 and 10. At one point, our OB-GYN said, "There are some problems with Claire…" and in true Gwen fashion, I said, "Well, we'll fix them!" He said, "I'm not sure you can…"
October 15, 2001 ~ Claire Elise
Our world spiraled out of control for the next few months as we searched for answers. After many misdiagnoses, much drama, and fear/worry out the yin-yang, we finally got some real answers about what was going on. Claire was diagnosed with MSG (Microcephaly with Simplified Gyral Patterns) by Dr. William Dobyns. He said she also had spastic quadriplegia cerebral palsy, epilepsy, and CVI (Cortical Visual Impairment). He basically told us he felt that her condition was likely genetic with a 25% chance for recurrence. He said he would help us find the gene(s) responsible so we could go on & have "healthy babies." He drew blood from Scott, Claire & me, and he told us that we'd need to start her on medicines to control her high tone/spasticity, reflux, and seizures. He said it would be a guessing game until we found the right combination, but that if we did EVERYTHING he said, Claire would likely not live to be one year old. He said she had FTT (Failure to Thrive), and her body was wasting away. He urged us to sign a DNR (Do Not Resuscitate) so when she fell ill (likely with pneumonia, which she would eventually die from), we wouldn't be too emotionally involved to let her go.
We decided these were shitty odds (our daPost too long. Click here to view the full text.