Ethan’s Story

Posted on Posted in Congenital Heart Defects, D&E, Religious Perspectives, Stories, Trisomy 21 (Down syndrome)
Ethan's Story
God met me where I was. While He didn’t give me the miracle I had hoped for, the one I had prayed for, miracles came in other ways, through my friends, family, and the nurses and doctors taking care of me.

By C.J.

This is Ethan’s story–my youngest son. It started out much like I thought for a third pregnancy. I have two healthy children, a girl, age five, and a boy, age three. I was sick with morning/all day sickness. When you are that sick and you have been through it twice before, it is hard to be too excited, but my husband and children were over the moon about the new baby. My son kept looking at my stomach and saying “is it getting bigger?” While my daughter began kissing my growing belly and writing “I love you” cards for her new sibling. My husband was the most excited, waiting on me hand and foot, delighted by the idea of a growing family.

Genetic Testing
We went in for our first visit at around nine weeks and the doctor discussed a genetic screening testing with us: an ultrasound scan to measure the nuchal translucency (NT) behind the baby’s neck. She said we were low-risk so there was no pressure to do any genetic testing. We told her we would think about it.

I never called to schedule the tri-screen; I decided we did not need it, but out of the blue, I received a call from the doctor’s office to schedule the test. I went ahead, thinking it would give us another chance to meet our baby on ultrasound. At this point, I was about 13 weeks along.

As the tech scanned my belly it was immediately clear something was wrong. The baby’s NT looked huge to me compared to what I remembered when we went through the same test with our son. The tech left and the doctor came in – never a good sign. He told me he wanted to take another look to make sure the measurements were right. Sure enough, the baby’s NT was elevated (3.6 mm) and he immediately recommended the cell-free DNA test to eliminate a potential chromosomal issue. We elected to do the blood test.

The Wait
My husband is a pediatric surgeon and had worked with the attending fetal maternal medicine doctor that identified our baby’s increased NT. The doctor told us based on the baby’s NT and my age we had a 1 in 249 or 1 in 149 (depending on the literature you apply) chance of having a baby with a chromosomal abnormality. He told us not to worry, that more than likely everything was fine. We tried to focus on the “odds,” but in our hearts, we knew something was wrong.

I had not told anyone at my work about the pregnancy, even though I was in my second trimester at this point. For some reason, something in my gut told me something was wrong. The two weeks that followed dragged on forever. We hoped for the best but our minds kept focusing on the worst. I was so distracted I was unable to work. I prayed like I have never prayed in my life. I went to the church and prayed, I prayed at home, I asked family and friends to pray for us. I bargained with God. I did everything I knew possible in hopes it would lead to a healthy baby.

The News
Two weeks later I was getting ready for work–determined I would go and hear good news and I would be able to return to my ‘normal’ life. I said one more prayer and headed downstairs, grabbed my keys and was met at the door by my husband. He was supposed to be at work. I knew then something was wrong, very wrong. Then the words … “I don’t have good news.” My heart sank. I told my husband – it’s okay, we can manage this, I can raise a child with disabilities, we are very blessed, we have a great life, two healthy kids, nothing will change that, we will be okay.

This is all easy to say when you are in the first stage of shock (denial).

The Diagnosis
I was skeptical of the blood screening test. I wanted to confirm the diagnosis with an amniocentesis (a needle through the uterus to drain some amniotic fluid and test the baby’s chromosomes). Since the doctor knew my husband, he was kind enough to do the amnio that same day.

At this point, I was 15 weeks along and the baby was much bigger. The tech took several pictures then the doctor repeated the scan and completed the amnio.

Then something I didn’t expect: The doctor told me I could wait for confirmation, but based on the ultrasound my baby not only had T-21 (Down syndrome),  he also had a major AV wall defect (i.e., his heart lacked the typical 4 chambers, it was like one big ball) and his bowel was not properly formed. He said my baby would never be a special Olympian and would need immediate, emergency heart and bowel surgery. And that was if the baby made it to term. He said the malformations he was seeing at 15 weeks would only get much worse and more pronounced by the 20-week scan, and that these deformities would require multiple surgeries and a life at a children’s rehabilitation hospital.

I asked the doctor what we should do. He could tell that termination was not what I wanted to hear. I told him I could not live with myself if I were to make that choice. Given that he works with my husband, he was very frank with us.

“I’m a Christian; I have been doing this for 20-plus years; I have seen these types of babies born and I have watched them struggle in pain, without a chance of having any type of quality of life, and I can tell you without a doubt that the merciful, Christian, moral thing to do is terminate this pregnancy,” he said.

His words hit me like a ton of bricks. At the same time I was told our baby had critical heart, bowel and brain defects, I was told that I would have to make the choice of when his life would end.

I left the hospital that day feeling numb and very alone. Two days later, the amnio confirmed the chromosomal defect which caused my son’s other, more critical, structural defects.

The Heartbreaking Decision
The decision was clear for my husband. Not easy, but clear. As a pediatric surgeon, he has dedicated the better part of the last decade to operating on babies with serious birth defects. He has watched babies struggle to breathe. He has heard babies gasp for air. He has seen babies suffer and die. He has put babies on life support. He has seen the effects of life support causing their little bodies to swell up. He has watched modern medicine prolong lives that should never have been prolonged. He has seen families ripped apart by the stress and emotional demands placed on them by children that modern medicine should have let go.

For me though, it was not a clear choice. I had met our baby on ultrasound multiple times; I now knew he was a little boy. I had listened to his heartbeat multiple times. I had felt him moving around inside me. I was completely in love with him, regardless of his condition. I am not medically minded, I have never been in a PICU, NICU, children’s rehabilitation hospital, or a pediatric operating room. I had no real understanding of my son’s medical issues.
My goal as a mother is to protect my children–the idea of terminating his existence was unbearable.

I immediately went to church. I did not trust the thoughts I would have alone, but more than that, I needed answers. I felt like my entire belief system had crumbled in the blink of an eye. I questioned every prayer I’d ever prayed, every belief I ever held, every instinct I ever felt that I thought was God.

I went to the sanctuary. A pastor met me there and asked if he could pray with me. Through tears, I explained my situation and told him that the doctor had recommended terminating the pregnancy.

I will never forget what he said. “You are talking about abortion?! I can tell you the church is against abortion…. We believe all lives are entitled to have a chance at life.”

He then prayed for me and my baby. My baby, the baby I knew, felt, loved, cared for, prayed for… he had the audacity to pray for my baby as if I were out to harm my own child. I left the church feeling lost, alone and confused.

I could continue with the pregnancy which would end with us putting our son on “comfort care” and watching him die after struggling for air for hours or possibly days (turning him into a pin cushion so that he could live in a nursing home was not an option). Or I could end the “life support” now, before my son had formed pain receptors.

I went home that night and remember crying out to God for help. The verse in the bible “Father, if you are willing, take this cup from me” (Luke 22:42), spoken by Jesus before the crucifixion, kept running through my mind. I felt just like that–I begged for God to take “this cup,” to grant me a miscarriage so I didn’t have to choose.

I always thought I would never end a pregnancy, for any reason, while I felt like I understood if people chose to do so for medical reasons or if the baby had severe medical issues. Things are much different when it is your child, your reality.

Over the course of the next few days I analyzed my decision from all angles: What about a miracle? What if God wanted me to carry this child to term and suffer while I watched him die? What if God is testing me? What if the preacher was right that “all abortions are wrong”? What if the doctor is wrong? What if he would only need a couple of medical procedures? If I continued this pregnancy, how would it affect my son and daughter, watching my belly grow but never getting to play with their brother? How would it affect my marriage if I choose to continue the pregnancy when my husband believed that would be cruel?

I was paralyzed by fear and uncertainty. All the while I was grieving for my son. He could have been normal. All of his structural defects stemmed from his chromosomal defect. If it weren’t for that extra copy of T-21 he would be able to play with his siblings, wrestle with his brother, laugh, enjoy life. It was devastating to think about.

I kept coming back to something the doctor said to me. If I told you that you would have significant cognitive defects, undergo multiple major heart and bowel surgeries (at a minimum), and that you would be unable to live outside of a rehabilitation hospital, would you want that life? Would you want to live in this world in that condition? The answer was clear–no. I would not.

The Procedure
I decided to end my son’s suffering before it began. While the maternal-fetal specialist recommended termination as the only merciful, reasonable course of action, because of hospital policy, he told us he could no longer perform the procedure (a procedure he used to do often for women in my situation). Also, because of my state’s legislature, I could not have the procedure until Saturday (five days after we found out our son’s diagnosis). So I had plenty of time to consider and reconsider our decision. I live in a state that is highly conservative., because of that, local doctors no longer perform the procedure because of death threats. There is only one clinic in my city that would perform the procedure and the doctor flies in from Washington to service the clinic since no local doctor can/will.

I live in a state that is highly conservative, where local doctors no longer perform the procedure because of death threats. There is only one clinic in my city that would perform the procedure and the doctor flies in from Washington to service the clinic since no local doctor can or will.

I felt like a societal outcast, shamed and regarded as immoral, cast out of the hospital where I had delivered both of my children because of society’s views of termination procedures.

The clinic had just opened two months prior. My doctor assured me that this clinic was run by a professional, private group and that they would take good care of me. The clinic had a tall, locking privacy fence, a security guard and double locking doors in front of the waiting room. You had to show your photo I.D. outside of the clinic and undergo a bag search before you were allowed through the doors into the waiting room. Protestors frequented the gas station across the street around the lunch hour. Spouses (friends, family, etc.) were not allowed beyond the waiting room. I was on my own for this one.

It was a two-day procedure. They start by inducing your labor, essentially, the first day and then conducting the termination part the next morning. Typically they knock you out with IV pain killers and a Xanax™-type of drug. I wanted to be awake and aware when our son left this world. It didn’t seem right being unconscious when he wasn’t. Fortunately, they allowed me to stay awake. The procedure lasted about ten minutes and went smoothly. Although painful, it was bearable.

I will never forget telling one nurse my story and her response: “Oh, you wanted this baby.”

Yes, I wanted this baby, more than anything… a parent wants their child to be healthy.

Where was God?
While it didn’t seem like it initially, I see now, very clearly, that God met me where I was. While He didn’t give me the miracle I had hoped for, the one I had prayed for, y miracles came in other ways, through my friends, family, and the nurses and doctors taking care of me.

I consider it a miracle (or gift from God) that we discovered our son’s critical defects at 15 weeks instead of at the 20-week ultrasound (which had been scheduled for five days before Christmas). I was so close to canceling the tri-screen. I’m so grateful I did not – it gave us a chance to make a decision before our options were severely limited.

Another gift: one of the nurses present during the procedure to assist was a 79-year-old Episcopalian, ordained minister–in an abortion clinic I consider that a little miracle from God. She held my hand the entire time. She let me know how much God loved me and my little boy. She assured me that God found my choice to be merciful and anything other than condemnable.

One of my friends connected me with a pastor that helped me work through the difficult decision process. She explained that this was not from God, this was not God’s way of testing me and that God loves me and my little boy. That God grieves with me and He knows my heart.

One of our friends insisted on going with us to the clinic to sit in the waiting room with my husband, both days. She never left his side and we were there for hours both days. She brought snacks, water, reading materials and a hand sewn blanket for our son after he arrived. She had to coordinate multiple babysitters to accomplish this.

My husband’s work schedule for the week of the procedure was inexplicably light to non-existent. He was able to be home to comfort me and help with our kids. Similarly, my work schedule was at a point where my project load was very light and my co-workers immediately offered to take back all pending projects on my list.

Friends and family brought us food, cards and took care of our kids when we couldn’t. All of these little things, that is how God works.

Parting Thoughts
I see God much differently these days. He is not responsible for righting every wrong, preventing every injustice, or protecting us from every harm. He does not change our paths to prevent pain. We live in a broken world, ruled by free-choice. As a result, things go wrong. Mother Nature can kick us in the ass. But when we ask, God is there to help us through. He will send caring people to meet our needs. And in time, He will find a way to make something amazing out of our suffering. I’m a better mother, wife, and human being because of my loss. I see people through a different light. I’m stronger, tougher, more understanding and a lot less judgmental. I have never been more grateful for everything that I have.

I no longer base my faith on things “going right,” rather I understand fully that God gives us no guarantees in this life except His unconditional love and eternal life in heaven.

There is not a day that goes by that I don’t think of Ethan and question my choice. Some days I’m steadfast in my decision, and other days doubts creep in. But there is one thing I will never doubt, when life happens, when the bottom falls out, God is right there grieving with us. He loves us, no matter our choices, no matter our faults.

If you are in a similar situation just know that God is love. He searches your heart. He knows this is an impossible decision. He knows that you are making your choice based on what you believe to be best for your family and your unborn child. God would never hold your choice against you. That is not the type of God he is. God is the author of life, not death and illness. Your situation is not from God. Your choice is not a test from God. Whatever you decide, God loves you. And, if you ask, he will meet you where you are at and provide you with little “miracles” to sustain you through your loss.

Ethan Luke, 12.3.16, you are forever in our hearts. Fly high son, and know that you are well loved and well missed.

 

 

CC0 public domain image by Marcino via Pixabay.