CENTRAL INDIANA – Normalizing the conversation is a shared goal by many in Central Indiana this Pregnancy and Infant Loss Awareness month.
Rebekah Delaney heads “Pathways to Hope” — the Riley Maternity Tower’s bereavement program for families.
“We have What to Expect when You’re Expecting. There’s no book called what to do when you go through a loss,” Delaney said.
She provided WRTV with the following statistics:
- One in four pregnancies end in miscarriage.
- One in 60 pregnancies ends in stillbirth.
- Nearly 24,000 babies are born still in the United States every year.
- Indiana’s infant mortality rate is now the 7th highest in the country and the maternal mortality rate is the 3 highest. In our newest maternal mortality rate published, suicide and mental health issues are identified as a leading cause of maternal mortality. Perinatal and infant loss increases a mother’s risk of depression, anxiety, PTSD, and suicidal ideations/ suicide thus making bereavement support not optional but imperative.
- 60-70% of grieving mothers report grief-related depression symptoms 1 year after stillbirth. In ½ of these mothers, the symptoms lasted for 4 years or more. It is estimated that 4.2 million women in the world are living with depression secondary to a stillbirth.
- More stillbirths occur every than deaths from prematurity and SUID/ SIDS combine
- Three kindergarten classes are wiped out every day due to stillbirth.
- 65 families in the USA bring home empty infant carriers every single day.
Families going through this journey, Delaney said, need community support, and that starts with a conversation.
“I want these statistics to change and they’re not going to change if there’s not community awareness. If moms don’t get the support they need, we’re going to continue having this,” Delaney said.
Penelope’s Story
Two dogs, a cat and two horses — Kayla Nuckles has a heart for animals. After trying for 18 months to get pregnant with her husband, Greg, Nuckles said she found out she was pregnant in February. Another member of the family was soon to be added – a baby girl, named Penelope.
“I felt great. We had our first ultrasound on April 1. She was jumping and moving all around, and we saw the heartbeat and we were ecstatic. You know, we were so excited. We announced that weekend,” Nuckles said.
The 27-year-old remembers going to buy a crib bed and setting up Penelope’s room.
“We miscarried our daughter Penelope at almost 14 weeks back in May of this year. We found out May 4, and we had her May 5,” Nuckles said.
Today, Penelope’s room remains at Nuckles’ Greenwood home. Her due date is Halloween.
“In that moment, just everything I knew about life disappeared. You know, all of these millions of memories I created with Penelope, you know, holding her to my chest after delivery, taking her home for Christmas, you know, her first steps, kindergarten, high school dances, teaching her to drive — I mean, they just disappeared. And I didn't know like how to function,” Nuckles said.
Every day since, Nuckles said she has made sure Penelope will not be forgotten.
“I really feel strongly about spreading awareness and breaking the stigma this month and letting people know that it's okay to talk about your loss and that it's important to talk about your child. Just because she's not physically here anymore, she's still so important in our lives,” Nuckles said.
Still, grieving the loss of Penelope has impacted the entire family – Kayla, her husband and beyond. Nuckles said the entire journey can feel extremely isolating and that is something she is determined to change.
“Having support and having other people like, yes, these emotions are normal, after you have a loss at whatever gestation, whether you were five weeks or 37 weeks, a loss is a loss. And you have that right to feel those emotions. And it's so important for other moms to be able to connect, and realize that those emotions are normal,” Nuckles said.
Hannah’s Story
Brittany Sipe said family is everything to her and her husband. Growing her family was something the couple, married since 2013, has wanted to do for years.
This spring, Sipe’s older sister, Lacey, became the couple’s surrogate. The pregnancy, Sipe recalled, was going well.
“I feel like it's cliche, but like, everything happens for a reason. And that's really hard when you're going through something difficult to remember that,” Sipe said.
Things changed August 23. That is the day the Sipe family learned at 16 weeks, baby Hannah was no longer.
“We heard the heartbeat was on our home doppler, but then that appointment, they couldn't find a heartbeat. And we were devastated. We had been, really, I think, naive to the possibility that might happen. I mean, we thought we had cleared that hurdle because we were so far. We were 16 weeks and so it kind of really blindsided us,” Sipe said.
Sipe stresses the importance in knowing you are not alone when going through this.
“My sister and I are these two halves of one hole. She went through the physical miscarriage and all that and all the hormones [and] I went through the emotional side of it,” Sipe said.
Since the loss and sharing her story, Sipe said several friends have shared their own stories with her family.
“It’s this community that I didn't choose to be part of, and you don't understand fully until you are part of it,” Sipe said.
Raising Awareness
These moms do not know each other, but their mission is shared – bring awareness to pregnancy and infant loss, while continuing conversations around the topic to normalize it.
“Perinatal and infant loss in the United States is often considered a taboo. People don't talk about it. These moms go home — the nursery is set up, you have your dreams all laid out in front of you, and you get awkward stares. You go into Target and look at infant carriers and nobody realizes you’ve been through loss. You go into places of worship, and people don't say anything because they don't know what to say, and so it's a very isolating experience and I want to change that,” Delaney said.
Indiana faces its own challenges when it comes to pregnancy and infant loss. Currently, the state’s infant mortality rate is the 7th highest in the country. Maternal mortality rates in Indiana is the 3rd highest in the country.
“We're not going to realize the reality of it until people start talking about it. Mothers need to start telling their stories, and guess what we cannot tell our stories if the community continues to look at us with these empty stares, or with these like, well, we don't want to talk about it,” Delaney said.
Delaney has helped both Central Indiana moms and their families through their respective bereavement journeys. She said the conversation around these topics must not only happen in October, which is the awareness month.
“If you have a friend that's been through loss, do not minimize their loss. My ask of you is that you would not say, ‘It's okay, it was God's will for you to experience that loss.’ That is not helpful to a bereaving mom, or ‘It's good you had your loss early on that way, you're not going to grieve as much’ because that is not true,” Delaney said. “Those statements are not true. They are not helpful, and they are not what moms need to hear. When you're speaking to a bereaved mom, my ask is that you would talk about their babies.”
Delaney asks those who are speaking with families who lost a child to use the baby’s name.
“When you're talking to moms, please don't minimize their grief, identify them as a mother and tell them you know, you are an amazing mother and I'm here for you in any way possible,” Delaney said.
Riley Hospital is hosting its first Light the Night event Saturday to bring together families affected by pregnancy and infant loss.
