When Baby Isn’t Perfect

Today is the eighteenth anniversary of my son Christopher’s death, and I’ll be heading out to the graveyard later, likely by myself. I like it better there alone. But I thought this post may be appropriate for the day–about what to do when you get a diagnosis that something is wrong with your baby.

I shifted uncomfortably on the cot. The baby had been pushing on my ribs for over an hour as the technician kept trying to get a better view.

“It’s a boy,” she announced as my husband entered the cubicle holding our 15-month-old daughter. We were ecstatic, but I couldn’t figure out why she wouldn’t look me in the eye.

The next day I learned the answer. “I’m sorry, Sheila,” my doctor told me. “There’s something wrong with his heart.”

It’s hard to explain the panic you feel when you hear that something is wrong with your baby, even one who isn’t born yet. And that panic only worsened for us as, over the next few weeks, I endured a dizzying battery of tests. We learned our son had Down Syndrome and a very serious heart defect.

I experienced such intense fears during that time. Could I handle a sick child? What would this mean for my daughter? Would all my time be taken up in caring for my son? What would his future be like? And above all, would I have to watch him die?

As soon as we learn we are pregnant—and for many of us, even before—we start dreaming of what it will be like to hold the baby, to watch him grow, or to see her blossom. But for some of us, those dreams are shattered. The child we dreamt about isn’t coming. The one we have has something wrong.

The first few weeks can be the most difficult in your life as you struggle to cope with grief and fear, care for a new baby and perhaps even rearrange your life. Here are some steps to help you through this challenging time.

1. Nurture your marriage

An estimated 25% to 33% of marriages break up within a year of the birth of a handicapped child. That’s not a statistic you want to join. Resolve now, before you do anything else, that you will still be each other’s greatest priority. Speak and act kindly to one another. Give each other space to handle the grief differently, without passing judgment. You will need each other in the years ahead. Remember that if you walk through this valley together, your marriage can emerge stronger and more precious to you than you had ever thought possible.

2. Take your feelings to God

Cheryl Molenaar’s daughter Lindsay, now 12, was born with a chromosomal defect that has left her profoundly disabled and with the mental level of a one-year-old. Cheryl remembers feeling grief at the loss of all her hopes and dreams, mingled with intense frustration at not being able to ease her daughter’s suffering.

It’s only natural that these feelings lead to anger toward God. How could He let this happen? For Cheryl, the experience shook her faith. Yet through wrestling with God, Cheryl learned God will always carry you through. “Sometimes you can’t feel God,” she says, “But ask God to let you see Him, and He will show you Himself.”

My son Christopher died when he was 29 days old. Though I never received an answer why, I was given something better: a peace I cannot explain that could only have come from God. God is big enough to handle our questions, when we seek Him out and let Him in.

3. Seek early intervention

Paul and Judith Colley’s daughter Laura was born prematurely at 25 weeks. A year later she was diagnosed with hearing problems and possible developmental delay, so she was quickly fitted with a hearing aid. At two years of age her speech was slow and doctors were concerned with her development. Today, though, after years of speech therapy, she is above average on almost every scale. This child, whom they once thought might be permanently delayed, is flourishing. The reason is early intervention.

When you’re given a diagnosis for your child, the simple truth is that no one knows the potential he or she has. Certainly some children will have a harder time learning than others; but for many early stimulation can help. Ask your paediatrician to connect you with community resources or books that can guide you through the process.

4. Ask for help

No one likes to feel that they can’t cope. Yet for Cheryl, outside help saves her sanity and keeps her from the brink of exhaustion. Seek out help from friends, relatives, your church, and community resources. You’ve been given a big burden to carry, but God never meant for us to carry our burdens alone (Galatians 6:2).

We live in a society that values perfection. Having a baby who’s not perfect throws us through a loop and challenges everything we believe. Yet through that challenge, we will inevitably come to “taste” God more as He sustains us day by day. As Cheryl cares for Lindsay, she is constantly reminded that His “grace is made perfect in weakness”. Her child has taught her things about God no sermon ever could. And as she loves Lindsay, so protectively and fiercely, she gets a clearer picture of how God cherishes her.

If you’re dealing with disappointment and grief, Sheila’s book, How Big Is Your Umbrella?, can help. Read more here.

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