It ended up being the most important day of my life.
When it comes to the chance for those with genetic defects to live, the news has not been good on either side of the Atlantic. Last week’s Telegraph reported that of all women in the U.K. who find out through prenatal testing that their baby will have Down syndrome, about 90 percent choose to have an abortion. And yesterday, ABC News reported a near-identical rate among women in the U.S.: 92 percent of those who find out their child will have the chromosomal defect decide to abort. One geneticist at Children’s Hospital Boston found that, without prenatal testing, the number of Down syndrome births would have increased by 34 percent between 1989 and 2005. Instead, the number of Down syndrome births has dropped by 15 percent over that time.
Upon hearing such news, I remembered Ellen and Al Hsu (pronounced shee), a Christian couple who works at InterVarsity Press in Downers Grove, Illinois, and who faced the same situation as the women above. This is Ellen’s story of Elijah, their 4-year-old with Down syndrome, as originally told on their family blog, Team Hsu.
I gazed in wonder at the blurry form on the screen. “Hi, Baby,” I whispered. The image of our baby was much clearer on the level-two ultrasound. The technician rolled the ultrasound wand over my growing abdomen, and I marveled as I watched our son squirm and suck his thumb. A new life forming within me.
Our OB/GYN had referred us for a level-two ultrasound after he noticed choroid plexus cysts on our baby’s brain during the standard 20-week ultrasound. I was anxious about what the maternal health specialist might find. We knew a couple whose ultrasound also had showed choroids plexus cysts, but whose baby was perfectly fine when he was born. We had spent the past week praying for our baby and hoping for the best.
Al walked into the exam room as the technician was finishing up. She hadn’t said much and explained that the doctor would be in to take a look for himself and to explain what he found. Al and I chatted quietly while we waited. I was relieved that he had made it before the doctor came in. Little did I know how much I would need him.
The doctor came in and began his exam. I was delighted at the chance to see more images of our baby. But my world was shaken when the doctor finally began explaining what he saw. “Something is very wrong with this baby.”
He continued to roll the wand over my tummy as he pointed to various spots on the screen and began listing all the “abnormalities”: larger than usual nuchal folds; clenched fists; possible club feet; something wrong with the liver; enlarged ventricles in the brain; possibly no stomach. My tears flowed as his list grew longer. My delight at the new life within me turned to icy fear, and I clutched Al’s hand tightly.
The doctor suspected a chromosomal problem, possibly Trisomy 13 or 18, birth defects caused by an extra 13th or 18th chromosome. He explained that both of these conditions are generally “incompatible with life.” We were told that if our baby was born alive, he was likely to die within a day. If we were lucky, he might survive for 6 to 12 months. We wondered if we should begin preparing for death instead of life.