Receiving Wylie: A High Risk Pregnancy Story

For each person living with myasthenia gravis, or MG, their journey with this rare condition is unique. That's why Untold Stories Life with myasthenia gravis, a new podcast from iHeartRadio in partnership with Argenics, is exploring the extraordinary challenges and personal triumphs of underserved communities living with MG. Host Martine Hackett will share these powerful perspectives from real people with MG so their experiences can help inspire the MG community and educate others about this rare condition. Listen to find strength in community on the MG journey on the iHeartRadio app, Apple Podcasts, or wherever you get your podcasts. Grainger offers supplies and solutions for every industry, as well as safety assessments and training to keep your facilities safe and your people safer. Call clickgrainger.com or just stop by.

Grainger, for the ones who get it done. This is Lee Habib, and this is Our American Stories, and we tell stories about everything here on this show, including your stories. Send them to OurAmericanStories.com. We love to tell listeners' stories.

And this is the only show in the country where America is the star, where the American people are the star. By the way, if you'd like to support all that we're doing here, it is a 501c3, a nonprofit, and you can support us by going to OurAmericanStories.com. Give a little. Give a lot.

It's tax-deductible. Do your part. And you can share what we're doing with friends and with neighbors, because there are so few things we can share with each other that's content. And now we have Carla Duerson on to share a story with us, and she is a student of one of our regular contributors, author Leslie Leyland Fields. Carla is sharing with us the story of her daughter, Wiley.

Here is Carla. 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 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 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 cliches. 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 manchild 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 Wiley.

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 and mind 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 heartbeat 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 re-entered the room. We also opted for a blood test in which they could use a sample of mind to find Wiley'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 anymore. And you're listening to Carla Doerson, and you're hearing her tell the story of her pregnancy in the news that she learned, well, that no parent wants to hear that her daughter was going to be born almost for sure with Down syndrome. When we come back, more of Carla Doerson's story, here, on Our American Stories.

Thanks for watching! For each person living with myasthenia gravis, or MG, their journey with this rare neuromuscular condition is unique. That's why Untold Stories Life with myasthenia gravis, a new podcast from iHeartRadio in partnership with Argenics, is exploring the extraordinary challenges and personal triumphs of underserved communities living with MG. Host Martine Hackett will share powerful perspectives from people living with the debilitating muscle weakness and fatigue caused by this rare disorder. Each episode will uncover the reality of life with myasthenia gravis. From early signs and symptoms, to obtaining an accurate diagnosis and finding care, every person with MG has a story to tell. And by featuring these real-life experiences, this podcast hopes to inspire the MG community, educate others about this rare condition, and let those living with it know that they are not alone.

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Head to LiveNation.com slash summer's live. And we continue with our American stories and we've been listening to Carla Duerson share the story of her daughter Wiley while pregnant with her Carla and her husband Gavin found out that there were cysts on Wiley's brain and holes in her heart. All signs of Down syndrome.

We return to Carla. The next step was to have a heart scan with a pediatric cardiologist. What other questions do you have? He asked. So if you repair her heart, she could run around and play ball.

Absolutely. We can repair children's hearts and they can have the potential to live a happy normal life. This amazing doctor with the assistance of skilled sonographers examined our little Wiley'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. 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. And 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 to 95% pass away before their first birthdays. I thought our baby was going to have the love chromosome, not the death chromosome. I grieved.

And we prayed. Wiley tipped her cards a few times. She shot up a clenched fist in an ultrasound, which is a common trisomy 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 Wiley 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, Wiley 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's breathing car. She's breathing.

I reeled and it began receiving Wiley. 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, Wiley 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, dietitians, volunteers, clerks, neighbors, therapists, so many people to hold us. We would have fallen. Gavin, Wiley, 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, Wiley 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.

Wiley'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 change the words to Edelweiss and 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. Wiley Girl, Wiley 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 forever. Wiley Girl, Wiley Girl, bless my daughter forever. And a special thanks to Carla Duerson for sharing her story, the story of Carla Duerson and her husband and her baby girl, Wiley, here on Our American Stories. For each person living with myasthenia gravis or MG, their journey with this rare condition is unique. That's why Untold Stories Life with myasthenia gravis, a new podcast from I Heart Radio in partnership with Argenics, is exploring the extraordinary challenges and personal triumphs of underserved communities living with MG. Host Martine Hackett will share these powerful perspectives from real people with MG so their experiences can help inspire the MG community and educate others about this rare condition. Listen to find strength and community on the MG journey on the I Heart Radio app, Apple Podcasts, or wherever you get your podcasts.

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