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Mother Reflects on "The Day We Let Our Son Live"

In 2009, an article in the U.K.'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. ABC News reports 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. Such troubling statistics make the story of Ellen and Al Hsu (pronounced "shee") that much sweeter.

Ellen and Al were thrilled to learn they were expecting a child—a boy, in fact. But their excitement turned to concern when Ellen's OB/GYN noticed choroid plexus cysts on the baby's brain during a standard 20-week ultrasound. Having seen the same images, a second specialist uttered the words no expecting parent wants to hear: "Something is very wrong with this baby."

The doctor suspected chromosomal problems that were generally "incompatible with life." Ellen and Al were told that if their baby was born alive, he would likely die within a day. At best, he might survive for 6 to 12 months.

Ellen writes of their fears in an article posted on Christianity Today's Her.meneutics blog:

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 ….
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 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.

Looking back on this critical moment, Ellen offers this powerful word: "The most important day in my life is the day we decided to let our son live." Soon after their decision to keep the baby, she writes that they began to refer to him as Elijah instead of "the baby." They decided that "even if he didn't survive the pregnancy, he was alive now and [they] would enjoy him as long as [they] could."

Ellen writes about what happened next:

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, Ellen gave birth to Elijah Timothy Hsu, and after several difficult weeks, Elijah was released from the hospital. Ellen concludes her article with these words:

Other than having Down syndrome, most of the other "abnormalities" the doctor listed were not present. Today Elijah is a happy and healthy four-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 seven-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.

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