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Peering into the Future

Our decision to have a second child was made before we were married. On a road trip to the Saratoga Springs Jazz Festival my fiancé, Brian, and I, with multiple hours to kill, tried to address life’s big issues. We discussed where we wanted to live. What our job ambitions were. And, of course, how many children we each wanted to have.

I quickly set Brian’s expectations to an appropriate level. He came from a family of five children. If he was looking for a similar number of offspring, he was marrying the wrong girl. I was still trying to wrap my brain around one. We happily settled on two.

I was 31 when I became pregnant with our first. I was given options for prenatal testing: alpha-fetoprotein test (AFP), amniocentesis, and high-level ultrasound. My OB/GYN sent me home with a folder stuffed with pamphlets and I readied myself for another “life conversation.” The AFP was non-invasive and performed at week 15 of pregnancy. There was no risk associated with it. We agreed to the AFP but opted out of the amniocentesis because I was young and healthy. We felt confident following the AFP with an ultrasound. We did not want to know the sex of the baby but were told that physical anomalies could be detected. 

Our AFP came back normal. Our ultrasound looked fine. No one was concerned. Everything seemed to be going as planned.

And then Amanda was born three weeks early, with Down syndrome, a gaping hole in her heart and an abnormal narrowing of the central air passages, or airway stenosis.

We began an odyssey of hospital stays, doctor appointments, therapies, and support groups. It took us three years to get to a place where we felt she was medically stable. Yes, she had a tracheostomy to assist with breathing, but we had managed to stay out of intensive care for well over a year.

Our life, which had been on “hospital hold,” was finally able to swing into full gear. We RV’d cross country. We day-tripped to the beach. We went to restaurants. Amanda entered preschool. We were living our version of a normal life. Thus we began contemplating child No. 2.

We had been married nine years; I was 35 and Brian was 36. We wondered: Could we handle another child with special needs? Was it fair to Amanda to add another child to the family? Was our marriage strong enough to bear whatever might come?

Our vision of family had always included more than one child. We saw, through a support group for families of children with Down syndrome, the benefit of sibling interaction, including compassion, nurturing, acceptance and inherent learning. We asked: Should we deny Amanda this opportunity because we were afraid?

We believed we should put our children first—and then the answer was obvious. I talked to my doctor about prenatal testing. We decided to forgo both the AFP blood test and amniocentesis. Studies have shown the inaccuracies of the AFP, which our previous experience confirmed. The amniocentesis was invasive and had inherent risk. The results didn’t matter. We were of the same mind—that we would not terminate a pregnancy regardless of the test results.

I knew couples who had received their diagnosis of Down syndrome prenatally. When you have a diagnosis, but no baby, all your focus is on the diagnosis. The Internet is friend and foe. Hours can be spent researching the possible issues that come with a diagnosis.

When my daughter was born, what kept me centered amid all the worrying diagnoses was . . .  my daughter. I could not imagine having all that information without having a baby to hold. With a baby in my arms, I could look at her beautiful face. I could snuggle her sweet body. I could push away all the fears of what might or might not be.   

Because I am tall, with a long torso, I was able to hide “Baby Bubba,” as we called it, for quite some time. But eventually our decision to add to our family became apparent.

I had not expected censure. Maybe I was naïve. Family members voiced concern:  “Are you sure you are up for this?” “Your life was just settling down, didn’t you want to enjoy that for a while?” “Was this planned?” 

But it was the strangers who threw me for a loop. They would see me with Amanda in the grocery store or on the playground and ask questions or make assumptions. “Did you know with your first?” “You are going to be tested, aren’t you?” “You are certainly going to have your work cut out for you.” “My, aren’t you brave.” Others simply showed their disapproval on their faces.

I wanted to tell them you can never know what might happen. Sitting in the hospital for two years, we saw what brought other families there for treatment: children suffered terrible accidents, babies with no diagnosis developed life-threatening diseases. Given the option, would the parents of those children have changed their life plan? Does anyone ever ask that question?

My second pregnancy—thankfully—was uneventful. Curious as to the sex, we did opt for an ultrasound. We were rewarded with a three-legged salute. Baby Bubba was a boy.

It was 6:30 a.m. when we left for the hospital the day Jason was born. I tiptoed into Amanda’s bedroom to give her a kiss on the cheek. My baby girl would no longer be the baby. This was the last time I would see her as my only child. I wondered, would she love her baby brother, or would she be mad she had to share her world?

We would soon find out. Our life as a family of four was about to begin.

Deborah Cavanagh lives in Manlius with her husband and two children. She has written for local organizations supporting children and adults with special needs and publishes the blog www.momofmanyneeds.com.


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