Family

Down Syndrome and God’s Grace Delivery System

Our beautiful baby and a new heart — for all of us

We were a mom and dad of many, happily married and expecting another child. Number nine!

It felt rather unreasonable. “God,” we prayed, “isn’t this a little too much to ask?” We’d need a bigger car. Bigger than our big car. Bigger than the Suburban! We laughed and cried and laughed again.

Then I went for the first ultrasound. I saw “AMA” on the chart, which seems innocuous enough, until you know what it means: “advanced maternal age.”

As the technician probed, she stopped chatting, which meant something wasn’t right. There was a marker. We needed to do more tests. The heart looked dark, like there might be an issue. I’d never had testing before, but I agreed.

We found out it was Down syndrome, and my best friend in the neighborhood drove over, and before I could try to joke it off, she hugged me. I remember that hug. It was like God bracing me, saying it would be okay. It gave me strength for what came next. The doctors said he — Paul would be his name — also had a heart defect.

We spent the next few months half the time worrying Paul would die in utero, and half the time worrying about what he would be like. My husband tried to brace me for the possibility we could lose him, and I held onto every kick as a reassurance, a fake guarantee, and wished he would kick more.

Down syndrome didn’t seem like as big a deal as the open heart surgery. People live with Down — we’d deal with it when we got there — but no one should hear “newborn” and “open heart surgery” in the same sentence. Talking about hearts the size of walnuts being broken open — it was the stuff of miracles and nightmares.

Paul was born, and we kept expecting him to look different. He didn’t really — only his eyes and his toes betrayed his condition. He was Paul, and he was beautiful.

The next two months blurred together as we tried to get him to gain weight. We went to the doctor’s office once a week to weigh him. We made formula in a way designed to get as many calories into him as possible. I felt like the witch in Hansel and Gretel, trying to fatten him up. Eat, my baby, eat! It didn’t work.

On Oct. 30, 2008, I took him for a weigh-in. The doctor listened to his heart, weighed him and listened again. She told me, “It’s time,” and gave me a long hug. I didn’t understand what was to come. However, I remember the hug. Again, God used someone to brace me for the next trial.

It was time to take him to the hospital. He could no longer be kept at home. To keep him alive, they’d have to supervise his calorie intake, monitor his heart and watch to make sure his kidneys didn’t fail. She called an ambulance to take me with him to the hospital.

I spent the next month at Children’s Hospital, alone with my child, sleeping on a couch, eating out of a vending machine and watching Ratatouille. The day they transferred him from the hospital to the Children’s Home, I freaked out. They wanted him to grow; he wasn’t getting bigger. The insurance wanted him out of the hospital until the surgery, but no one knew when the surgery would take place. The only guideline was “bigger.” Except he’d lost two ounces since coming to the hospital. How long before the surgery? How long could I be away from my other eight children and my husband? Were we just running out the clock? How long can we wait before he might die?

I screamed at the doctor. Recognizing the post-partum she’s-been-away-from-home-for-a-month-and-her-baby-is-no-better syndrome, the doctor took my son into his arms. He put one hand on my shoulder, bracing me. “I’ll hold him,” he said. “You have to trust me. I know how precious life is.” And he told me about being held at gunpoint in his native town in South America, and talking the fighters out of shooting him or the children with him, because he could treat one of the soldier’s wounds.

His words, “You have to trust me,” felt like God speaking to my heart. I slept hard that night, the first full night in weeks.

That doctor had written a note, along with an analysis of the data of Paul’s weight loss and the recent spike in temperature, recommending surgery within the week.

I never saw the doctor again, but I owe him my son’s health, and probably my sanity.

The surgery was performed quickly, and three weeks later Paul and I came home for good. It felt like it was his birthday. We had emerged from the tomb. He’d been given a whole new heart out of the old one that didn’t have a wall or enough valves to sustain him.

paul

Today, Paul is seven. He plays with trains and dinosaurs and just came and demanded to put on his Iron Man costume. The hugs he gives are reminders of those three moments when I fell, and God picked me up through other people. Down syndrome is a reality. He’s still mastering potty training. We’re still mastering communication. However, having him is like having any of our other children, someone we didn’t know we couldn’t live without.

 

Sherry Antonetti is a former special educator and currently a freelance writer and mother of 10. She writes at Catholicmom.com and her blog, Chocolate for Your Brain. E-mail her at sherryantonettiwrites@yahoo.com.

[Editor’s note: See Simcha Fisher’s “The Heart in the Shadows” for another perspective on the diagnosis of Down syndrome.]