Over the summer, my wife Karla participated in a writing class with author Leslie Leyland Fields. Through that opportunity, a door opened to share Wylie’s story on the national podcast Our American Stories. I helped her through the agonizing process of recording this story. (Karla often can’t get through cartoon stories without crying) and today it was posted on their website. I’ve not shared a lot about our experience with Wylie on this blog. (Karla and I occasionally have done that over on her blog), but needless to say our world has been forever changed by Wylie. I’m super proud of Karla for being obedient to write about Wylie as she sensed God’s calling to do that, for taking a writing class, and for sharing this story with the world through this platform. You can listen to the podcast episode here or read the transcript below. We continue to thank you all for your support and prayers as we enjoy each day with Wylie and hope to help her fulfill her purposes!
How do I begin a story that seems to have begun long before I was born? How can I go back far enough to show how all the tributaries ran along to cause this river that is my life? There is not a way I can see now except to begin somewhere and trust that those small streams will reveal themselves even in the flow of mightier water.
“Choroid plexus cysts…choroid plexus cysts…” I turned these alien words over in my mind and tried them in my mouth. Was I saying it right? Gavin and I were back in the Subaru and trying to decide if we could continue with our plan. “It says here that most of the time they just resolve. They don’t cause any harm it seems,” I murmured these words to him as I scrolled through several health articles describing these intruders found on our unborn baby’s brain in an anatomy scan.
“Should we still get the balloon?” Gavin wondered aloud.
“We should,” I resolved.
He pulled into The Dollar Tree. He went in and gave the employee the sealed envelope the sonographer had prepared for our gender reveal surprise and the box to hide either a blue or pink balloon. In the meantime, I called my best friend from the passenger’s seat in the parking lot.
“Elizabeth, they found cysts on the baby’s brain and maybe a problem with the heart.”
“I’m so sorry,” she breathed.
I knew she was. There are no platitudes and clichés. She is familiar with suffering. She is full of empathy and love. We cried and prayed the rest of the short way home with the balloon in the box in the back of the car. We stopped in the driveway. This would not be the only time we would wonder how to face our family of five children with news we did not understand, let alone know how to bear.
We took deep breaths and went inside knowing that, in the midst of the painful mystery of what had just happened, there was apparent joy. We gathered in our living room and decided to video the momentous occasion. Our eldest man-child hovered over his younger brother and three younger sisters who almost all thought the balloon would be blue.
The eldest sister decided to go with pink, “I’m going to say, ‘It’s a girl,’ because I want you to know, baby, that if you’re a girl, I believe in you!” She announced this to the camera.
We sliced the box open and we all gasped, laughed, and marveled at the pink balloon that floated up to the ceiling. It did seem to take the heaviness of the “what ifs” off our shoulders. Everything felt lighter in the wonder of our baby girl, Margaret Wylie.
From the beginning, she has been full of surprises. Her story barely feels like it’s mine, too. Yet, I was there. I remember the nausea. I remember the faces in mine comforting,supporting, helping. I remember the room and the thoughts and the unfolding. I was there. We were doing this together, this being born.
After the anatomy scan, with the choroid plexus cysts on the brain and the possible heart abnormality, we were scheduled to see a high-risk obstetrician. I was expecting it to be nothing, something easily explained away. “She is just fine,” I imagined the doctor saying. He said nothing of the kind.
“You see her heart here. It does not have a wall where one should be,” I felt like he was talking so fast and my heart beat joined his rapid cadence. He could see the cysts, but their presence was more evidence for his final evaluation, not necessarily a problem in themselves.
“I am quite certain that your daughter has Down Syndrome.”
My heart dropped. I asked him to say it all again. Her growth, the cysts, the heart defect, it all added up, in his estimation, to a genetic disorder. Then came the offers of how to move forward or not move forward with the pregnancy.
“We can arrange for any or all of it right here in the office.”
We asked for a moment. Reeling, I dropped my legs off the side of the exam table toward Gavin. We knew that advanced maternal age carried risks. And we also knew that we did not want to end this life that had begun. We explained that conviction for the first of many times when the doctor reentered the room. We also opted for a blood test in which they could use a sample of mine to find Wylie’s genetic information. It was not diagnostic, like an amniocentesis would be, but for the time being it felt safer to us. We did not realize that safety, as we knew it, would no longer be an option any more.
The next step was to have a heart scan with a pediatric cardiologist. “What other questions do you have?” he asked, visibly meaning to answer more than the one hundred we had already asked. Gavin and I looked at each other. Gavin has so many good questions. “So, if you repair her heart, she could run around and play ball?”
“Absolutely. We can repair children’s hearts and they have the potential to live a happy, normal life.”
This amazing doctor with the assistance of skilled sonographers examined our little Wylie’s tiny heart and found that she had a large hole between her ventricles, a small one between the chambers of her atrium, and a very leaky valve. He spoke clearly and candidly about human limits. We did not yet know what her genetic condition might be, but looking at her heart, he conjectured that she could be born at our local children’s hospital and would not need emergency surgery for her heart. Gavin and I were so impressed by the doctor’s patience and kindness with us. We were understandably overwhelmed, but also felt encouraged that there was help and would be help for Wylie. We left the appointment marveling at the technology and knowledge that could assist the tiniest of people.
On a Tuesday morning following, I answered the call from the high-risk obstetrician.
“I’m sorry to tell you that the test has different results than expected. I thought it was Trisomy-21, but the test came back with a strong likelihood of Trisomy-18.”
Frozen. I knew. I knew what that meant. In researching choroid plexus cysts, I had come across information about Trisomy-18, Edwards Syndrome (the next most common after Trisomy-21, Down Syndrome). An Edwards’ prognosis is incredibly bleak. Most people choose not to continue the pregnancy. Of those that do continue, only 50% are born living. Of those who do live, 90-95% pass away before their first birthdays. I thought our baby was going to have the “love chromosome” not the “death chromosome.”
I grieved. Gavin grieved. Our family grieved. Our friends grieved. And we prayed. Wylie tipped her cards a few times. She shot up a clenched fist in an ultrasound, which is a common T-18 trait. She grew, but very slowly, another telltale sign. Her brain was abnormal.
Other moms on this journey describe the same experience I had: the strangeness of carrying a bustling, busy baby on the inside who is given almost zero chance of making it on the outside. The day came when our doctor told us it was time for new cuisine and fresh air. The placenta, also affected by the genetic disorder, was not serving her well anymore.
For the first time in my experience of motherhood, I chose between a Monday and Tuesday for an induction. The struggle was real. Preparing for her birth, I could feel the temptation to pull away from my daughter. The idea of having to let her go was so painful. I wanted to protect my heart. I prepared myself for the worst in hopes of getting over the loss more quickly.
But in the midst of this emotional removal, a friend reminded me that Wylie needed me.
Like many other times in which something felt impossible–forgiveness, letting go, choosing mercy over judgment–I felt God helping me open my heart all the way to my precious girl. I realized, either way, whether alive on earth or in heaven, I would still have the chance to hold her. This encounter became my new focus. I knew I would never receive a gift of which I was more afraid.
On the scheduled day Wylie was born but not into my arms. She was born into the hands of doctors who pulled her from my body and onto tiny beds with machines as Gavin and I held hands. We didn’t know if she was coming or leaving. Goodbye was easier to imagine than hello.
Yet, Gavin went to her, held her body and announced, “She is breathing, Kar. She is breathing.”
I reeled. And it began—receiving Wylie.
A few long hours later, on May 8th, she was placed into my arms. I did not know how to hold her. She had tubes and cords and leads springing from her. In my disbelief, I cradled my daughter gently. She was born weighing four pounds and eight ounces. I trembled beneath her weight. She was like the break of day. A constant prayer flowed silently from my heart, “How, Lord? How do I hold her?”
With her tiny body and her determination, Wylie brought with her a deep sense of the present. I dared not leave it. Along with that, she attracted hands, so many hands! Family, friends, nurses, technicians, doctors, social workers, dieticians, volunteers, clerks, neighbors, therapists, so many people to hold us. We would have fallen–Gavin, Wylie, our other children, me. We would have crumbled if it weren’t for the grip of people who carried our burdens and met our needs.
Through those hands and prayers, Wylie endured three holes in her lungs, an open-heart surgery, arrhythmias, a pericardial effusion, pulmonary hypertension, seizures, RSV, and numerous infections with intubations. We wondered more than once if she was leaving this world.
On one occasion, I looked upon my daughter with such sorrow and cried out to God to know how to endure witnessing her suffering! But slowly, she was gaining. With great awe, I witnessed my daughter choosing us, choosing to stay.
Now, these days, we gather what she has sown. She is thriving. She is still the gift that inspires me. She still attracts a crowd of helpers and admirers. She still takes our breath, but in a whole different way. Trisomy-18 has become a welcome death sentence. We are glad that our small, comfortable life has died. We were glad to put to death selfishness in our family. Wylie’s Trisomy-18 diagnosis has been a death to living with a false sense of control and misplaced trust.
Receiving her, just as she is, has been a gift of a new kind of life with God and an amazing time of living with her in the here and now. In light of time’s uncertainty, heaven and eternity have never seemed sweeter or more real. I have a song for her. I changed the words to “Edelweiss” and I sing them over her. The edelweiss flower grows in the high altitude of the Alps and is a symbol for bravery, courage, and love. How fitting for our mighty warrior!
Wylie Girl, Wylie Girl
Every morning you greet me,
Soft and light,
Sweet and bright,
You look happy to meet me.
Blossoms of love,
Will you bloom and grow,
Bloom and grow,
Wylie Girl, Wylie Girl
Bless my daughter,