The WORST Question I've ever been asked. The answer is NO!

This post is a follow-up to my July 18 post titled "That day at McDonalds when I got the call...that changed us."

"Do you want to terminate the pregnancy?"

This horrible question was asked to us the day after our world was rocked with the call from my OB saying that it appeared our unborn baby had a abnormality of the spine. We found ourselves sitting in the office of a maternal fetal medicine specialist in Annapolis, MD. If you have never heard of that type of specialist (like me at that time), they are the doctors who help women with high-risk pregnancies. That includes moms who’ve had multiple miscarriages, those expecting twins or more multiples, women over 35, and those of us with babies who will require extra special care.

We had asked our pastor’s wife and friend, Doris, to come with us and provide emotional and prayer support as we stepped into this unknown world.

Honestly, I felt pretty out of place as I sat in the waiting room. The other women in there all looked at least 10 years older than me and way more pregnant. At 26 years old, I was pregnant for the first time and my 5’7” frame mostly hid the fact that I was already five months along.

Here I am 5 months pregnant with my first child. This photo was taken May 17, 2008
about 2 weeks after I learned about Adria’s diagnosis.

Finally, it was our turn to talk with the genetic counselor. I had never heard of them before either, but a genetic counselor is a unique healthcare professional with training in both medical genetics and counseling who assist in educating and supporting families with high-risk pregnancies or those at-risk for complications. According to the National Association of Genetic Counselors, they discuss the medical, psychological and familial implications of genetic contributions to “diseases” by:

• Asking detailed questions about family and medical histories to consider what may have caused this issue and what’s the future likelihood
• Educating about inheritance, testing, management, prevention, and resources
• Counseling to promote "informed choices" and adjusting to the risk or condition

So there we sat, listing every member of our large families and any health challenges. Yes, there is a history of cancer and high blood pressure, but no known disabilities.  We were healthy with my only issue being a tendency to easily faint when in physical or emotional pain.

Bottom line, we had no apparent increased risk to bear a child with spina bifida, but in most cases of spina bifida there is no known family history. It can just happen.

So what is spina bifida? That came next. I’ll elaborate more another time, but in layman’s terms it’s when the baby’s spine does not form properly early on in the pregnancy and can cause the spinal cord to protrude from the baby’s back in a sac. Because critical nerves are never formed properly – spina bifida often impacts many functions of the body and can cause paralysis, lack of bladder and bowel control, fluid on the brain, educational delays, deformed limbs and more.

It affects each person differently and is actually the most common permanently disabling birth defect. There are different types, but the most common - and most severe type - is myloemeningocele. That is likely what our baby has, since we were sitting there that day.

This image shows what spina bifida (myloemeningocele) can look like on
a baby in the wound. Provided by Children's Hospital of Philadelphia website.

Deep breath. Too much information. Did not know what to say but still held out hope that they might be mistaken.

 

After all the questions and discussion, came the worst question I have ever been asked.

 

“Given this information, do you want to terminate the pregnancy?”

I liked our genetic counselor, but she may as well have asked, "Do you want to kill your baby because she's got some serious issues?"

NO! NO, NO and NO.

I thought, are you kidding me? Are you seriously asking me this horrible question just days before I will celebrate my first Mother’s Day anticipating the birth of our child. This information scares the crap out of me, Yes. But in no way does it change the level of affection I hold for the life growing inside me.

To put it into perspective, let me share an excerpt from my personal journal that I had written several weeks before that day after hearing my baby’s heartbeat for the first time.

I was in total awe and felt rather nostalgic and sentimental the rest of the day. It’s indescribable how incredible the miracle of life is. Wow, God. Quite Impressive…It feels as though the bond of carrying our child is drawing Adrian and I closer together than ever before. I know we’ll face our share of parenting issues, but there’s nothing like a life that’s formed as part of both of you out of love, to unify.

I had no idea what was to come when I penned those words in the privacy of my room. But as I read them again, they mean more to me than ever.

Genetic counselors are trained to ask that question under the guise of family planning, and from what I understand, a decent percentage of people say “Yes” when given the option to terminate after learning their “fetus” has issues. Granted, some issues are much more severe with limited life expectancy, but I still strongly believe in giving a baby the opportunity for Life.

I sit here and look at this beautiful, happy girl enjoying the Disney channel like thousands of other pre-schoolers and think how sad it is that someone would choose to deny her life and deny themselves the joy of being her parent.

After letting them know that we would continue with the pregnancy no matter what, I got to see my baby again. We went in for a level 2 ultrasound with the doctor. There on the monitor, in much higher definition was a precious, active little baby who they quickly confirmed was a girl.

Silent tears rolled down my cheek as I held my husband’s hand and looked at her.

And then I saw it clearly. Her bubble. The outline of a sac protruding from her lower back. Our baby girl had spina bifida.

Though I was afraid, I suddenly felt closer to this child inside me, realizing that life would be much different for her and us than I had ever anticipated. But I loved her even more with that knowledge.