Tuesday, February 17, 2009

The Day We Let Our Son Live

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, now slippery with gel, and I marveled as I watched our son squirm a bit and suck his thumb. A new life forming within me.

Hoping for the Best
Al was supposed to be with me at the doctor’s office, but was running late after discovering his car had a flat tire. I hoped he would arrive in time to see the clearer images of our son. Our OB/GYN referred us for a level two ultrasound after our noticing 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 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 while she worked 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 Al had made it before the doctor came in. Little did I know how much I would need him.

“Something is Very Wrong”
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 of the “abnormalities” he found. Larger than usual nuchal folds…clenched fists…possible club feet…something wrong with the liver…enlarged ventricles in the brain, no stomach (but maybe he just couldn’t see it yet because the baby was so small). 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. The doctor 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 procedure was over quickly and the baby seemed to be okay, that is, if you didn’t count all of his “abnormalities.” 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.

Thinking the unthinkable
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 for us 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 and I had no idea how to respond. 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 and difficulties 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.

The Diagnosis
We chose a name and 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, shortly before Christmas, 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. “What? 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% of people who receive a pre-natal diagnosis of Down syndrome decide to terminate their pregnancy.

A New Life
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 (NADS) 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 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 NICU (Neonatal Intensive Care Unit). After several difficult weeks, Elijah was released from the hospital and we took him home.

A New Normal
Other than having Down syndrome, most of the other “abnormalities” the doctor listed were not present. Today Elijah is a happy and healthy three-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 six-year old brother, Josiah, play and fight together like any siblings. He also gets into trouble, like any three-year old might. 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.
What has surprised me most about Elijah is how he is more “normal” than he is different. He has developmental delays and it sometimes takes him longer to learn new skills, but for the most part he’s just 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 than 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.


Momma Mango said...

Thanks for sharing that, Ellen. I remember those scary days when we all wondered how Elijah was developing, and what the diagnosis may be. I think I prayed more during that time than I had in a long while... God used your baby to pull me closer, so I often thank Him for Elijah for that reason as well.

Anonymous said...

Thank you, Ellen, for writing this. I praise God for your and Al's faithfulness. Elijah is such a joy.


Ellen said...

Thanks, guys.

Santiago's Story said...

O My I just got done reading your story! Sounds very much like mine. My son was born with trisomy 13 and I was told he was going to be Born with Trisomy 21. our stories are swiched. What strong people we become once we go thru somthing so bad!! I see your son is doing very well. Here is my sons story http://santiagosstory.blogspot.com/

Simon Owens said...

Wiser Pregnancy recently conducted a scientific survey that found that less than 20% of women have either amniocentesis or any kind of fetal screening.