A person is still a person, and a life is still a life

I received my son’s diagnosis when I was 36 weeks pregnant. It was an ultrasound I had “just for fun.” My OB-GYN called a few days later and said I urgently needed another ultrasound. “Did anyone tell you the length of your baby’s legs!” he exclaimed. I knew they were having trouble getting the measurements, but we all thought the baby was curled up tightly.
 
One week later. Confirmed. Our son had achondroplasia. Achondroplasia is a skeletal dysplasia which happens once in every 40,000 births. He would be a dwarf. Neither my husband nor I had any risk factors. It was simply a genetic mutation. The explanation of how it happened has been shared with me several times. I still can’t tell you.
 
We were sent home from our OB-GYN with a book, The Encyclopedia of Congenital Anomalies. Our page had a sticky note on it for easy reference. I will never forget the last line: “Unfortunately, this condition cannot be diagnosed until late in pregnancy, so abortion is not an option.” That was 30 years ago. Today, I suspect abortion is an option, and what a loss to society that would be.
 
A few days after the diagnosis, I asked my OB-GYN whether people with achondroplasia suffer more from alcoholism. His response was, “No, but they like to be together. That’s why you see them in the circus a lot.” My husband and I sat in stunned silence, nodding our heads. Had we known then what we know now, we could have countered with the fact that children with this condition are valedictorians, business leaders, and physicians. Their intelligence is normal, and their abilities are infinite. They are just like the rest of us, except they are short.

When Michael was born by cesarean section, he was extraordinary. Sweet rose petal lips. Beautiful round head with blonde hair. I tried to ignore that he looked a little different. His arms and legs were a bit shorter. Early on, this condition is not always immediately obvious to the uninformed. Sometimes even physicians miss this diagnosis until the baby is older. In hindsight, I wish I wouldn’t have known. The trauma of the various comments made by my OB-GYN and the shock of having a child with a birth defect were a lot to bear during the final weeks of pregnancy.
 
Michael is now 30 years old, and raising him, and all four of our children, has been a delight. He has been relatively healthy. He was a champion wrestler in high school, and he was even in a movie as a stunt double. He has a personality and confidence that lights up the room. We are better people because of his presence in our lives.
 
Even better, he is married to Jess, a woman who is also a little person, and I could not have picked a better spouse for my son, a better mother for my grandson and granddaughters, or a better daughter for myself.
 
Sadly, we lost both of our granddaughters within the past two years because of genetic complications. Margot lived 2-1/2 months, and Bernadette lived around a week. Jess and Michael knew early in both pregnancies that their daughters’ medical outcomes would be inconsistent with life, yet the girls were lovingly carried full term and baptized in the hospital immediately after birth. As we watched Michael and Jess’s journey through both pregnancies, my husband and I have been humbled by their commitment to life.

One of my favorite quotes is from Dr. Seuss: “A person’s a person, no matter how small.” Our family can attest to that. I would humbly add that a life is still a life, no matter how short.

SHEILA S. WITOUS, M.B.A., C.P.A., C.G.M.A., 
is chief administrative officer of Radiology, Inc., a large single-specialty physician practice serving multiple facilities throughout North Central Indiana and Southwest Michigan. She and her husband, Michael, are charter members as well as past presidents of the South Bend-Elkhart Chapter.