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.
Frightened and uncertain of our baby's future, we agreed to an amniocentesis. We would not, we thought, consider aborting our child, but we wanted to know what to expect. And this situation wasn't really covered in What to Expect When You're Expecting. Al held my hand while the doctor extracted amniotic fluid from my womb using a long needle. The doctor explained that it would take around two weeks to receive the results, and mentioned when we would need to make a decision regarding termination.
Once we were home, I went to our bedroom and wept. I left Al to explain what was wrong to his mom, who was watching our three-year-old that day. I was worried she would blame me.
Later that evening, after we'd both had some time to process the news, Al and I talked. I felt lost. This scenario didn't fit any of my plans. We talked about funerals, and, if the baby survived, what life would be like for us and for him.
"What should we do?" I asked. "I never thought I would even think this, but do you think it would be more compassionate to terminate the pregnancy?" I felt horrible even thinking about abortion, but given what the doctor told us, I honestly wondered which was more the more loving thing to do: save him from the pain he would likely experience if he survived, or allow him to live.
After a moment of silence, Al responded, "I think we should do no harm." Relieved, I quietly agreed. From that moment on we began to prepare ourselves to welcome our son into this world, no matter what that looked like. The most important day in my life is the day we decided to let our son live.
We began to refer to our son as Elijah instead of "the baby." It helped us to remember that he was real. Even if he didn't survive the pregnancy, he was alive now and we would enjoy him as long as we could.
A couple of weeks later, the doctor called with the results of the amniocentesis. Elijah was diagnosed with Trisomy 21, more commonly known as Down syndrome, a condition caused by an extra 21st chromosome. We had done some research. We knew that a diagnosis of Down syndrome meant that Elijah would have difficulty learning. We knew that he would experience developmental delays, such as walking and talking later than typical children. We also knew that he was more likely to have a congenital heart defect and other medical problems.
The doctor asked if we had made a decision regarding termination. I was surprised. "Why would we terminate? It's only Down syndrome!" I was actually relieved. Elijah would most likely survive. I had no idea at the time that close to 90 percent of people who receive a prenatal diagnosis of Down syndrome decide to terminate their pregnancy.
Although we were glad Elijah would most likely live, we still grieved our lost hopes for a "perfect baby." I vacillated between mourning, "This is not what I planned for my life!" and making new plans. I spent many evenings crying (pregnancy hormones were bad enough, but a difficult diagnosis made things even worse). We read whatever books we could find about Down syndrome. We contacted the National Association for Down Syndrome and were paired with a support family. I was put on partial bed rest and spent a lot of time at the maternal health specialist's office for appointments and non-stress tests.
On April 8, 37 weeks into the pregnancy, I went to see the maternal health specialist for a standard appointment. I told him I was a little worried because Elijah wasn't moving very often. Since Elijah was technically full-term, the doctor decided we should deliver him via C section. I was promptly taken to a hospital room where I called Al and told him that we were having a baby—today!
A few hours later, Al held newborn Elijah Timothy Hsu up for me to see. He was small, just four pounds seven ounces, and looked like a little old man. I had a few moments to gaze at him before the nurses took him to the Neonatal Intensive Care Unit. After several difficult weeks, Elijah was released from the hospital and we took him home.
Other than having Down syndrome, most of the other "abnormalities" the doctor listed were not present. Today Elijah is a happy and healthy 4-year-old. He loves preschool and is learning to read. He communicates using a combination of sign language and spoken words. He enjoys giving hugs, dancing, and babbling in front of a mirror. His smile lights up a room, and his laugh is contagious. He and his 7-year-old brother, Josiah, play and fight together like any siblings. He often throws his food off the table when he's finished eating, and once he colored on our white furniture with a purple marker.
Elijah has developmental delays and sometimes takes longer to learn new skills, but for the most part he's a normal kid doing normal kid stuff. Elijah's first year was sometimes difficult and overwhelming, but life with Elijah has settled into its own routine. Taking care of him is not all that different from taking care of our typical child. And loving Elijah comes just as naturally to me as loving Josiah.
I can't imagine life without Elijah anymore. He brings us so much joy. I'm so glad he's alive and that he's a part of our family. And I look forward to the day when Elijah can tell me about the most important day of his life.