When Gavin and I learned that Wylie likely had Trisomy-18 we wondered if we would be able to find doctors. Based on our reading about the disorder, we discovered that healthcare providers don't always offer every intervention to children with Trisomy-18, still considered by some as a lethal abnormality.
In our case, we did not have to wonder very long. Our conversations began with Baptist Health's high-risk OBs and palliative care team before being transferred to the University of Kentucky. Wylie's health, even at that time, caused pause. She lacked many of the problems that babies with Trisomy-18 encounter. Did she have mosaicism? I remember one of the doctors at Baptist recommended we ask the UK Team to take every measure at her birth to save her life. I remember the gratitude swelling in my heart when she said so. She believed that Wylie had a chance.
We had a very smooth and positive transition to UK. We met with many providers. They all told us the same story when we wondered aloud about Wylie's future. They emphasized, "She will tell us. We will give her what she tells us she needs." Again, my heart soared. That was our hope--that Wylie would be seen and heard and treated as she was, not just based on the label of her possible genetic disorder.
Their story was not fiction. That story was true. Through non-stress tests and ultrasounds when Wylie was in the womb, through the process of her birth, and in the many days that followed in the NICU, Wylie communicated with us. She told us she was happy inside me until the umbilical cord flow from her to the placenta slowed, and then we knew she was ready for fresh air and different cuisine. She tolerated labor until she didn't and let us know with heart decelerations during contractions. Her face was presenting. She needed a cesarian and one was given. Wylie breathed and then ate and then let us know she needed help with the eating, so we gave her a G-tube.
Each step of the way, the most brilliant, talented, skilled professionals attentively put their eyes, ears, hands, hearts, and minds on a four pound eight-ounce neonate. The only agenda that I witnessed among them was to respond well to her communication. You can't imagine what it was like to be in the room every morning with the rounding group of providers gathered for a tiny baby. The health care providers didn't do things TO Wylie, they accomplished things FOR Wylie.
I have realized my skepticism. "Sure, listen to Wylie. She will tell us what she needs." Does a baby really have that much power or ability? Surprisingly for me, the answer is yes. She does.
This is how one of my favorite authors, Ann Voskamp, put it,
"Sometimes, we try to manipulate hearts to beat the way we want — rather than letting people’s hearts communicate what they need.
And I'm with you, it really does take a lot of courage just to listen to a heart — exactly as it is — and not try to manipulate its beat.
And it's so tempting to drum our thinking into others — instead of letting people march to their own drum.
But I must remind myself and put this on repeat -- We get to be like Jesus to people as they march to their own drum. And it’s only Jesus who gets to change drums."
This is the Jesus I am getting to know:
“He will not quarrel or cry aloud,
nor will anyone hear his voice in the streets;
a bruised reed he will not break,
and a smoldering wick he will not quench,
until he brings justice to victory;
and in his name the Gentiles will hope.” (Matthew 12:19–21)
Through Wylie, God has given me a life-altering picture of what it is to really see, hear and respond to a person. I want to be like Wylie's team who listened with the purpose to provide, to support, to uphold her life. What a wonder when a person listens, like God does, only to help, not to force or to find an angle. And the life that emerges? Wow! Wylie is thriving!
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