I was 46 years old and pregnant with our sixth child and going in for the first ultrasound of the baby. This was my fifth child after the age of 35 and I was not particularly concerned as long as there was a heartbeat. There was a heartbeat, and despite the ultrasound tech’s somewhat cold demeanor and no doctor available to speak to me after the appointment, I thought nothing of it. Later that evening, I received a call from the OB/GYN who had been unable to meet with me earlier that day. He informed me that the ultrasound tech had concerns because of the nuchal fold measurements that were obtained during the ultrasound and that they were referring me to the perinatologist. The whirlwind had begun.

Subsequent ultrasounds indicated that the baby, a little girl, appeared to be at risk for Trisomy-21 (Down syndrome) along with a host of other concerns including fluid around the heart and other details that are now blurred in my memory. I do remember the doctor commenting that things did not look good and that we would “see if the baby was still alive” with the 16-week ultrasound. That hurt to hear. But the baby was indeed alive and thriving at 16 weeks and many of the concerning items seen in the previous ultrasounds had simply disappeared. Despite the high risk that the baby had Down syndrome (maternal blood tests came back with a 9 out of 10 chance that the baby had Down syndrome), we thought that we were in the clear. We could handle Down syndrome. But at 22 weeks, the heart defect was revealed (a large atrial septal defect (ASD) and multiple smaller ventricular septal defects (VSDs) as well as a valve defect that I never completely conceptually understood) and a whole new world of worry opened up for us.

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