Infant loss awareness: Honoring little lives lost

October is Pregnancy and Infant Loss Awareness Month and it’s time to #ShatterTheStigma. A bereaved couple share their story in hopes of helping others.


If you’ve experienced the loss of a child or know someone who has and you need support, you’ll find links to important resources as well as Pregnancy and Infant Loss Awareness Month events around the country at the end of this story.

Losing a baby through early pregnancy loss, stillbirth or the death of a newborn is a devastating and life-altering experience for parents. Sadly, it’s an all-too-common one with one in four pregnancies in the United States – or one million pregnancies each year – ending in loss.

Early pregnancy loss is the most common way to lose a baby with 10 to 25 percent of pregnancies ending this way. Stillbirth, which is the loss of a baby after 20 weeks of gestation, occurs in about 1 in 160 pregnancies. Neonatal and infant loss statistics are more complicated to determine because of varying definitions of these categories.

But even though pregnancy and infant loss is common, many parents still feel incredibly alone when it happens to them and don’t know where to turn for support. They may feel that their friends and family don’t understand the depth of their grief and why it’s taking them so long to “get over it”.

A bereaved couple want you to know you’re not alone

When DJ and Annie Horton found out they were expecting a third boy in 2015, they were over the moon. Annie was so excited that she would forever be a “mom of boys” and she welcomed the mayhem with open arms.

But she wasn’t far into her pregnancy when she started to feel that something wasn’t right. She kept experiencing abdominal pain and she knew she should be feeling more movement from the baby by the time she reached 17 weeks.

Despite all Annie’s concerns, her doctor reassured her again and again that everything was normal. “I finally couldn’t walk and my husband had to take me to the emergency room,” says Annie. “They told me it was just kidney stones, but the next day we went to see a specialist.”

Nothing could prepare them for the news they would receive

DJ and Annie sat in shock as the specialist explained that there was a hole in Annie’s placenta and it had been leaking fluid. Their baby’s lungs and limbs were unlikely to have developed properly, and to make matters worse part of his brain hadn’t fully developed. If he made it to delivery, he would suffer from seizures and probably wouldn’t make it past his second birthday.

Once Annie and DJ managed to process the information they’d been given, they cried in each other’s arms until they had no tears left. Sadly, they didn’t have to wait long for Annie’s condition to decline, and within a couple of weeks they were heading back to the hospital. Doctors explained that she was going into labor and they should wait to see how it would unfold.

Welcoming Baby Isaiah into the world

On November 13, 2015, at 21 weeks pregnant and on the day of her 29th birthday, Annie gave birth to a beautiful baby boy named Isaiah.

“They told me he most likely wouldn’t survive through delivery, but by God’s grace he did,” says Annie. “We were allowed to keep him for as long as we wanted. He was pretty tiny and we kept him wrapped in my husband’s baby blanket. We held him for a few hours and just wept and prayed over his tiny life. He passed away in our arms. I kept him for about 8 to 10 hours after delivery. My mom came and held him since she had flown in the day before.

“I struggled with handing my baby over to the nurse and just never seeing him again. It was one of the hardest things we’ve ever done. The hospital was very understanding when it came to letting us have our time and never pushing us. But being on the labor and delivery floor was so hard. I would hear the sounds of a brand new baby crying or the nursery rhyme playing over the speaker each time a baby was born. I knew I needed to go home.”

Coming to terms with life after loss

But when the Hortons got home with their sons, Griffin, 4, and Levi, 2, they had no idea how to begin rebuilding their broken lives.

“There are so many things I wish someone had told me,” says Annie. “I wish the hospital staff had told me my milk was going to come in, that my body was prepared to care for a baby who wasn’t here. Formula and photo companies will send you coupons to use for a baby who isn’t there.”

Coping with the people’s reactions – or lack thereof – was also really difficult for Annie and DJ. “So many people told me, ‘He’s in a better place,’” says Annie. “I wanted to scream and say, “What place is better than with your mom and dad and brothers!” I know people meant well, but the initial reaction in my grief was anger.

“We also had many friends who never acknowledged our loss – more so for my husband. Men don’t really know how to react when they hear their friend’s baby passed away. I was hurt for my husband because dads grieve too.

“As I’ve come farther out from my grief, I’ve realized that pregnancy and infant loss just isn’t talked about enough. It’s such a quiet topic, so people don’t know how to respond to loved ones or friends who are experiencing a loss.”

Where to get help

If you or someone you know has lost a baby and you need support, head to the Share Pregnancy & Infant Loss Support website. With over 75 chapters in 29 states, Share offers support to bereaved parents in the form of bedside companions, phone support, face-to-face support group meetings, private online communities, and more.

“I urge parents to find a support group,” says Annie. “Share provides such a wonderful opportunity for you to connect with others who have experienced the loss of a baby and truly meet you where you are in your grief. If there isn’t a group in your area, there are many other support groups we direct families to for help. We never want a parent to feel alone as they walk through something so difficult.”

You can also get involved in the numerous Pregnancy and Infant Loss Awareness Month events held around the country every October. To find a list of remembrance walks, candlelight vigils and other events, head to the website. If you can’t find one near you, do an online search for events in your area.

Use the hashtags #PregnancyAndInfantLossAwareness #ShatterTheStigma #BreakTheSilence #ShareWalk2017 #WOL2017 and #IAm1In4 on your social media.