Her.meneutics: The Day We Let Our Son Live

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November 2, 2009

The Day We Let Our Son Live

It ended up being the most important day of my life.

Ellen Hsu, guest blogger

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.

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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.

Comments

What a precious and inspiring post of the gift of life for every child.

You continue to inspire me as I watch your growth through so many hard times. My son once asked me how we explain the unfair distribution of difficult circumstances in our world. I don't know the answer to God's permissive will, but I do know that you have been given a special child and he has been given special parents. There is a merciful and lavish balance in that.

Thanks for sharing your story, Ellen. God bless your beautiful family.

13 years ago a close friend of mine was informed that her baby would be born anencephalic (or at best with a very small brain and would die shortly after birth). Her doctor encouraged the parents to abort the baby to spare them the grief. Her religious convections made this a non-option. Thank God! Her baby was born without any of these issues (he was born with Type 3 Fibular Hemimelia, which means he was born without a fibula bone, which required amputation). The parents felt that God prepared them for this, because this was minimal compared to what they were told to expect. He is now healthy and one of my son’s best friends, he is also a superstar baseball player! I wish more people would come forward with these stories to reduce that 90% abortion rate that was quoted in the article!

My parents gave birth to my sister Dec. 27th, 1977 with no previous knowledge that she would have Downs. She also had blockage in her intestine that made it impossible for her to pass food. A doctor took my dad into a broom closet and told him that they would not perform the life-saving surgery that she needed and thereby let her die since she had Downs if that is what my parents decided was best. My parents refused.

My sister has been such a blessing to my life and to my family. Not every day has been easy, not for my parents especially. But every day has been worth making the right decision and letting my sister live.

Thank you for sharing your encouraging story. I too pray that it will help women think twice before terminating based on diagnosis!

Ellen and Al-
Thank you for making such a difficult decision! I love my nephew and am excited to see him grow and learn each day. I wish we lived closer so I could play a bigger role in their lives. Both Elijah and Josiah are blessed to have you two as parents. Thank you for sharing your story and being an inspiration to so many others.

Thanks for the story. Every time I see you at the bookfairs, I wanted to ask about your son but didn't know how to. Glad to know Timothy is doing well.

Thanks for the encouraging comments and for sharing some of your own stories. I believe that whatever God allows in our lives he provides the grace and the strength to help us through.It is not so much that we are special parents or even particularly brave. It is that we serve a good and loving God who is able to do more than we could ever ask or imagine.

And Hosung, you are always welcome to ask about Elijah. We greatly appreciated the support so many people gave us while we were preparing for Elijah's birth and praying for his well-being. Like any other mom, I am proud of both if my children and happy to talk about them. I usually even bring photos to bookshows :)

As a pediatrician, Christian, and entirely pro-life, several things in this story trouble me.

THIS DOCTOR made implicit assumptions about the parent's decision, after the diagnosis was provided. He even did so after Down Syndrome was confirmed. Certainly, this would be more difficult with a Trisomy 13 or Trisomy 18 result.

However, I must also challenge the PARENTS. I do hope that they scheduled a consultation visit after the fact with this physician. There are several reasons for this.

First off - his implicity anti-life bias needs to be addressed. Regardless of his personal value system, he is bound to respect and not prejudge the value system or belief system of his patients.

Secondly, he needs to answer as to why the possibility of Down Syndrome was not raised initially. Admittedly, the finding of an enlarged brain ventricle or absent stomach are not associated with Down Syndrome. HOWEVER, these were not there at birth. What does that tell us?

It tells me that this doctor needs to review the margin of error of the ultrasound, the technique of its administration, the current model of ultrasound equipment which he is using, and finally the experience and accuracy of the person who read the ultrasound.

This doctor should openly share that medical information with these parents. If apologies from HIM are appropriate, they should be given.

As Christians, we can ethically be more than accepting of our sufferings - as necessary as that is. These parents have the opportunity to not only thank God for their being spared a severely deformed child.

They ALSO have the opportunity to enlighten this physician, and help refine both his methods of diagnosis as well as his methods of communication. In doing that, they may well prevent other couples from such an unnecessarily agonizing experience before a confirmatory diagnosis is given.

In fairness to our physician, my feelings during the exam may have clouded how I heard what he said. He did mention Down Syndrome as a possibility and did not pressure us to terminate in any way. He could have communicated his initial findings with more compassion, but he was supportive of our decision to keep Elijah. National Association for Down Sydrome and other DS advocacy groups offer training for physicians to help them communicate a diagnosis of DS using both compassion and accurate information.

I teared up reading this, because I remember my own parents in tears as they struggled to explain to us kids why the baby brother that I held in my arms was going to be different than other babies. That was nearly 15 years ago now, and I love Matt more than I know how to express. I wrote about Matt here:

http://papuagirlindallas.blogspot.com/2009/07/watcing-my-brother-with-downs-syndrome.html

and here:
http://papuagirlindallas.blogspot.com/2009/09/matts-track-team.html

Regarding a trisomy 13 diagnosis; I have a 23-year-old daughter borm with Partial Trisomy 13. Rebecca also has Partial Trisomy 15, because she has what is referred to as a translocation. In Rebecca's case, the extra chromosome in each of her cells is composed of part of the long (q) arm of an extra partial chromosome 13 and part of the long (q arm of an extra partial chromosome 15. Rebecca reads on about a 5th grade level, has excellent cursive handwriting, can perform basic arithmetic calculations, count money, and tell time. She loves church, baseball, and her adult special needs group, in which the members participate in sports, cooking, playing games, making crafts, having group discussions about why we vote, how one reads
social cues, how to be helpful to others (the needy and soldiers serving our country, for example) and so on.

Rebecca started out with Trigonocephaly, a heart issue (which, we thank God, did not require surgery), strabismus (a wall eye, in her case), an extra toe (fully functional), large strawberry hemangiomas, an umbilical hernia, clenched fists, etc. For reasons I can only attribute to a blessing from God, Rebecca, though born at a huge big-city hospital, was not diagnosed until age 12. Doctor after doctor just kept offering tests, treatments, therapies, and surgeries for each of her issues, as needed.

Our family is part of an online support group at www.livingwithtrisomy13.org which has albums for surviving individuals with all forms of Trisomy 13 (full partial, translocation, mosaic). There are 90+ survivors on that album. There is also a Prenatal Album for families expecting a child with T-13, and there's a Treasured Memories Album on which families can honor the memory of a child with T-13 who has passed away. There are also multiple message boards.

I have been amazed at how many of these children are NOT born with significant numbers of the issues doctors claimed they had (not might have, but definitely had). I believe in healing, but I also suspect that some ultrasound techs and doctors get an amnio report, or see some thing(s) they believe point to a certain chromosomal syndrome and then just begin to run down the list of evey possible anomaly listed in the medical books regarding such a syndrome.

At any rate, I have met many of these kids at SOFT (Support Organization for Trisomy 13, 18 and Related Disorders) Conferences, and they, as does Rebecca, bring their families joy!

I also have a child with Down syndrome, a daughter, age 3 1/2. And we too were shocked to discover, upon birth, that she had an extra chromosome. She was born around Christmas time, and one of the refrains that ran through my head was from "O Little Town of Bethlehem:" "The hopes and fears of all the years are met in thee tonight." Initially, there was only fear. But eventually, we learned to have great hopes for her. And we found that it was in Jesus that we were able to find a space to hope in spite of the fears.

Penny, like Elijah, is learning to read. She is also learning that she has a past. She asks me to tell her stories about herself. She is particularly fascinated by her birth story and medical history. I tell it like this: "When you were born, the doctors were worried. They thought you were sick because you have Down syndrome. But they checked your heart, and it had some little holes, so they fixed them. And pretty soon we all realized we didn't need to be worried anymore."

Thanks for sharing your story.

Amy Julia Becker
www.amyjuliabecker.blogspot.com

*Thank you!*
For your decision,
For your witness.

May God bless you, your son, and all other children and parents in similar situations.

I have a grandson, Tyler, who was born with Williams Syndrome a problem with the 7th chromosom. None of us were aware of this defect until a couple of months after his birth. It was which much difficulty that my son and daughter-in-law dealt with this. However, at least they found reason for his schedule, lack of tolerance, etc. He is as cute and loving as can be. He also survived brain cancer and was treated at St. Jude Hospital in Memphis. I was fortunate to be able to be with him and his parents there. He spent 14 weeks in ICU during his eight month stay. This summer he celebrated his sixth year of being cancer free. He is now 12. While Williams Syndrom is different that downs, there are some similarities. He is in school and in the fifth grade. He is currently reading on a second grade level. Since communication is difficult it is difficult to test him. But I am sure that his achievement and knowledge outrank what the tests show.

Thank you for sharing your story. One aspect of having a special child that is not often discussed is the affect he/she has on the family. Not only the parents, but other siblings and the community as a whole.

I hope this story will encourage you, Ellen and Al. My cousin Warren was born in 1946, long before there were any educational opportunities for Downs children. My aunt and uncle literally moved heaven and earth to get such opportunities for him, including moving several times to get into different school districts. Warren graduated from high school at age 19. He read voluminously, at about grade 7-8 level. At about age 22-23, he was able to be employed at the Univ. of Ky. Medical Center (Lexington), as a laboratory assistant in the pathology dept, and did extremely well at this for almost 30 years, getting empolyee of the year at least once. Everybody there knew Warren, and he was on first -name basis with several of the professors. Warren was an active Lion as was his dad. He was a deacon at church. He helped every Sunday at his church's Sunday school at the local Shriner's Children's hospital. Warren literally made lemon meringue pie with the lemons he got. As many Downs do, Warren got Alzheimer's about age 56, and has now gone to be with the Lord. But he was a great blessing to many people during his stay on earth. I pray many blessings for you and for Elijah and I pray he may also be a continuing blessing to you and many others. Love, Shirley Barron and Tom Kersey

Thank you for sharing this story. My good friend had a similar situation. I recall getting a letter from her 10 years ago to say that she found out her child in the womb has Down Syndrome and she was planning an abortion. . .a week later she said she was going to have the baby but give her up for adoption. A week later, she said "we are keeping the baby." My friend is not a believer.

That baby is now 10 years old and the love of this family's life. The siblings love Emma so much.

I grew up with a brother who was mentally retarded and it taught me so much compassion.

Cornelia Seigneur
West Linn Oregon

Thank you for sharing this beautiful love story. When I was 16 weeks pregnant with my first child, the alpha fetal protein test revealed a chance of spina bifida and Down syndrome. I was devastated. My husband and I had worked long and hard for this baby, as I had difficulty conceiving. My doctor suggested an ultrasound at 18 weeks. It was 20 weeks before we got the diagnosis. Those were the most terrble four weeks of my life. I knew I did not want to abort my baby, but, like you, I wanted to be ready. The baby was fine, he was born 9 pounds 11 ounces and with curly red hair. He's 17 now. When I unexpectedly overcame my fertility issues at the ripe old age of 40, the doctors noted that the odds for Down syndrome were high at my age. I had another amnio, so I would know what to expect. My precious angel Hope was born 11 years ago. In between I had another healthy boy who is 15 now. I am so very blessed, but I have often wondered if I received the diagnosis of Down syndrome, or something worse, if I would have had your courage.

Earlier this year, when I was still working as a reporter, I had the privilege to interview a young man named Mitchell Levitt. With Jason Kingsley, he co-authored a book called "Count Us In." Both young men live on their own, hold jobs and have active lives. Both have Down syndrome. Interviewing Mr. Levitt was an amazing and humbling experience. Life-changing, really. When I read that 92 percent of Down syndrome babies are aborted, it broke my heart. What an incalcuable loss to the world.

With such a loving family, I predict great things for Elijah in the future.

Leslie Palma-Simoncek
Holmdel, NJ

I am so humbled by your story. I am from Uganda, a country in Africa where even if you did a scan it would be very difficult to detect all those details!!!
That said, there is so much that we take for granted,so much we assume. I have a friend that has a severly handicapped precious 7 year old girl and I have learned so much from her and her family. GOD does bring such beautiful little ones into our lives to teach us and to help us grow. May the LORD bless you both greatly for reflecting His love in having Elijah. He is precious.
Vanessa.

Hello
First of all I must say that your son looks really very cute and innocent.I can understand that you have gone through so much pain.I like that you share all this with us.

Thank you so much for sharing your story! It takes great courage to do what you did when so many are not, and I know that your son blesses you every day!

Thank you so much for your beautiful and inspiring story. Elijah is absolutely beautiful. God has richly blessed you, and blessed little Elijah with wonderful parents. Thank you for sharing God's amazing love in a world so pulled down by so many. Your story is pure joy!

thank you for your story and your willingness to have your child no matter what the odds. My daughter gave birth to her first child, a daughter, who had full trisomy 13, diagnosed by amnio at 20 weeks. Tree weeks earlier an ultrasound showed the high probability of trisomy 13 or 18. There was never a question of aborting Grace. We believe in pray and healing, and trusting God that He is in control of all aspects of our lives. He was not surprised by Grace's condition. We grew so much closer as a family through this and Grace's life and our commitment to her ministered to many of our friends, who aren't Christians. Only in eternity, will we know all that God used Grace's story for. Grace was stillborn, but even though we desperately wanted her to be born alive, we are confident that God took her home early, perhaps because it would have been too difficult to watch her live, then die, and have to say good-bye. Through it all, we had prayed for God to be glorified, and we know that He was. We would have missed out on so many blessings, if Grace's life had been ended by an abortion. The doctors tell my daughter this should not happen to them again, only a slightly higher risk for a Down's syndrome, but highly unlikely. My daughter's response was, "Downs? Is that all? You can live with that. We could easily handle that." All life if precious and has purpose.

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