By Jane Lebak

On February 28, 2000, we had an ultrasound to find out if we were having a boy or a girl. Instead we learned our baby would die.

The doctor faced me and my husband across the exam room with an air of irritation. I was 23 weeks pregnant. She explained as though to a kindergartener that our daughter wouldn’t be able to think, wouldn’t hear or see, and (in the doctor’s opinion) would be terribly ugly. She wanted us to terminate the pregnancy.

Termination wasn’t an option. God had given us this baby. We would carry Emily to term.

Choosing Life

Every year, between six and ten thousand couples learn their baby has a fatal birth defect. From cardiac issues to missing kidneys to extra chromosomes, many babies are diagnosed with birth defects that prevent them from developing inside their mothers and living in the outside world. While Mom supports their growing bodies, they survive; after birth, the baby’s body just can’t keep functioning. Our daughter had anencephaly, a neural tube defect in which her brain had failed to form.

In 2000, there weren’t many resources for parents who didn’t terminate. The genetic counselor’s booklet had chapters in support of four different methods of abortion, but only a few pages for a couple who carried to term.

“Why aren’t you terminating now?” asked one nurse.

Why? Because God had given Emily life, and even though short, it was hers. Because this little one deserved to receive whatever love her parents could give in the five months remaining. Because Jesus had said, “Whoever welcomes this little child in my name welcomes me; and whoever welcomes me welcomes the one who sent me” (Luke 9:48).

A Welcomed Child

We hear a lot about every child being a wanted child, but Emily was a welcome child. Did we pray for a miracle? Of course. But we would welcome her however and whenever she showed up.

I didn’t say any of that to the nurse. Instead I replied, “I might live 80 years. Compared to that, what’s five months? But those five months are the rest of her life.”

For the next 20 weeks, I lived with Death. At first when Emily kicked, I would cringe at the reminder; later I cherished all her movements. We prayed for the best, and we prepared for the worst. I bought newborn outfits, a couple in case she lived and one for her burial. We selected a cemetery plot, and I purchased a funeral dress.

God’s Providential Care

Those months deepened our relationship with God. My husband and I had to trust in God’s providence at a time when God’s providence wasn’t obvious. Psalm 139 says God knit us in the womb, so did this mean he dropped a stitch?

But God’s providence became more visible the longer we prayed. For example, I had changed medical practices just before the diagnosis, to a practice with supportive midwives rather than doctors who might have tried to coerce a termination. (That nasty doctor was an aberration.) With time to plan, everyone in our families would have the chance to meet Emily. I joined organizations of other mothers who had “been there,” women who were strong and gracious and spiritual. If they could survive, maybe I could too.

In addition to all our friends, people we’d never met were praying for us. A teacher in Virginia had her second graders praying for Emily every day. An entire convent full of nuns prayed for Emily too. We were surrounded in prayer and in Scripture.

Some parents in the support group took comfort in the words God said to Israel right before sending them into exile for 70 years in Babylon, “‘For I know the plans I have for you,’ declares the Lord, ‘plans to prosper you and not to harm you, plans to give you hope and a future’” (Jeremiah 29:11).

But personally, I clung hard to the words of Job 2:10: “Shall we receive good from God, and shall we not receive evil?” (English Standard Version). Not that Emily’s life was evil, but I needed the affirmation that God could put me in a difficult situation and that I was meant to be here. Or this, from Isaiah 45:7, “I form the light and create darkness, I bring prosperity and create disaster; I, the Lord, do all these things.”

We weren’t enwrapped in chaos. Instead we were right there in God’s hand, exactly where he wanted us to be. “Can a mother forget the baby at her breast and have no compassion on the child she has borne?” (Isaiah 49:15). I couldn’t forget my moving little one, and just as I had plans for Emily, God had plans for us.

Offering Support

My friends and family wanted so badly to help, but what can you do? If you know a parent in this situation, I found these most supportive:

Talk about the baby. Don’t act as though she doesn’t exist. Use her name.

Give the parents freedom to express whatever they’re feeling. They may use dark humor to cope, or their faith may falter, but they need you to listen with an open heart. Don’t argue. If their argument is with God, let God handle his defense.

Show support by acts of service, or with gifts that acknowledge their need to make memories. Bring a meal to stash in the freezer for nights when they have no energy to cook. A small photo album might help, or an offer to take pictures after the birth.

Welcome the parents and the baby as they are. Don’t assume you know what God wants from this situation, and please don’t question the parents’ faith if the baby doesn’t receive total healing. Instead pray that God guides you in the best ways of supporting them.

Emily was born on July 19 and lived in my arms for two more hours. She met her brother, her grandparents, and her aunt and uncle. She experienced nothing but love in those hours, and at midnight the chaplain came to pray over her.

I can’t sugarcoat it. Jesus didn’t give us a soft cushy cross to haul up our own personal Calvary. Jesus never promised his way would be easy, and some days I wondered what would happen if I fell beneath that heavy burden and just didn’t get up again.

But even at the worst times, we weren’t alone in our grief. When we took up our cross and followed him, we ended up learning from his divine humility. We experienced God’s strength as sustenance when we couldn’t have muddled through ourselves. By loving Emily, we experienced unconditional love from the giving side.

That infant loss group I found so helpful? Eventually I ended up running it. I created a website for parents carrying to term. I wrote magazine articles and was interviewed in newspapers. Eventually I wrote a book.

Because we were broken and reformed with new humility, people have found us trustworthy with their own doubts and their own pain. Because we experienced God’s light in our loss, we have been able to reflect that light toward others. In eternity, we’ll see how far and how beautifully God’s light has reflected.

Jane Lebak is the author of A Guide for Carrying to Term: A How-To for Parents of Babies with Lethal Birth Defects, and can be found at www.janelebak.com.

Where to Go for Help

Parents who are carrying to term infants with fatal birth defects have many resources available to them today. As they seek out support groups focusing on their child’s specific condition, they can also connect with organizations created to support parents in this specific kind of grief.

• Perinatal Hospice and Palliate Care is a support organization for parents who are in that twilight time. http://www.perinatalhospice.org

• For additional support parents can seek out Be Not Afraid at http://www.benotafraid.net/

• Anencephaly parents can get help and information at Anencephaly.info.
http://www.anencephaly.info

• Carrying to Term Pages compiles practical tips for parents who are carrying to term—from how to deal with people who do not understand their circumstance to how to pick out a funeral dress while still pregnant.
http://www.janelebak.com/ctt/index.html