Moments with Addison
About 25,000 pregnancies end in stillbirth each year in the U.S. Gazette reporter Gina Duwe knows the pain of that loss first-hand. She and her husband lost their child Addison, seen at 20 weeks in the above ultrasound, to stillbirth in 2012.
Gina Duwe | Sunday, June 29, 2014
JANESVILLE—The 1 a.m. ultrasound confirmed our worst nightmare.
“There's no heartbeat.”
The nurse's words cut through the silent, dimly-lit hospital room.
Shock set in. We weren't supposed to start parenthood this way. Our baby girl of eight months had died before we had even met.
My husband, Mike Heine, held me as we tried to comprehend the loss.
My thoughts quickly jumped: “But I'm still carrying our baby. Now what happens?”
The nurse gently explained our options and later walked us to our car in the early-morning darkness.
• • •
As a reporter, I often ask people to open a window to their lives and share their stories with the world. I wanted to do the same after a stranger heard about the stillbirth loss of our daughter and said, “I didn't know that still happened these days.”
Too often, it still does.
Stillbirth is the death of a fetus after 20 weeks or more of pregnancy. It happens about once in 160 deliveries, meaning there are about 25,000 stillbirths annually in the United States, according to the American College of Obstetricians and Gynecologists.
In Rock County, it affects about a dozen families each year, according to state data. The county had 11 fetal deaths at 20 or more weeks gestation in 2012 and 13 such deaths in 2011.
So far this year, St. Mary's Janesville Hospital has had one stillbirth, and Mercy Hospital and Trauma Center has had four.
The loss usually happens before labor.
Our baby's movements slowed in the prior day or two and stopped, triggering the alarm for us. That's often how a woman figures something is wrong, said our doctor, Brian Stafeil, a Madison maternal fetal medicine specialist with Dean Health System who sees high-risk patients in Janesville one day a week.
“We put a lot of stock in fetal kick counts,” he said.
It's a quick test women can do at home by counting the number of fetal movements in an hour, twice a day. Ninety-five percent of women will feel four to five movements in an hour, though most feel that many in 10 to 15 minutes, Stafeil said. When a woman feels less than that or a decrease in movement, she should go to the clinic, he said.
“Often we hear, 'I haven't felt any movement in a couple days,'” he said. “Don't wait a couple days. Come in as soon as possible.”
Nine out of 10 times, the baby is fine, he said.
“We're trying to catch that very small population that maybe something may be going on.”
Miscarriage—death of a fetus before 20 weeks gestation—happens more frequently. An estimated 10 to 15 percent of pregnancies where women know they are pregnant end in miscarriage, according to the March of Dimes.
As many as half of all pregnancies, however, may end in miscarriage, but that number is unknown because many women miscarry before they know they're pregnant, according to the March of Dimes.
• • •
About six hours after leaving the hospital, we packed our bags to return, passing through a living room filled with toys, clothes and other gifts showered upon us a week earlier.
While I was eight months pregnant, my body was not ready for delivery. The waiting game started midmorning at the hospital. Over the next 20 hours, medications attempted to send my body into labor while the tears flowed freely.
The pain of reality started to set in.
We had to pick a name.
We had to decide where we would bury our baby girl.
The next steps for a family receiving this tragic news are usually up to them.
Some want to get the delivery over right away, while others need time to prepare, said Gretchen Finley, director of maternity services at Mercy New Generations Birthing Center in Janesville.
“If they need to have time, we want to be able to afford them time,” she said. “If they're physically and clinically stable, there's no reason we wouldn't have that time.”
• • •
When you lose a fetus at eight months, another cruel reality is you still have to go through child “birth.” In all the hours I spent worrying about delivery, it looked nothing like this.
With Mike and my mom at my sides, we delivered our tiny angel, Addison Renae, on Aug. 16, 2012. She was 5 pounds, 10 ounces and 18 inches of perfect.
It's tough to do anything but cry for the camera when you're holding the baby you had planned to take home. But we are so grateful now for those moments and memories with Addison.
We found surprising comfort in holding her swaddled body in our arms. Looking back, we only wish we would have done more—more photos, more video, more talking to her and praying for her. Mostly, though, we wish we'd had more time with her.
I later asked my obstetrician, Dr. Kristin Miller, how the delivery compared to a normal delivery. It was nearly the same, she said.
• • •
The following weeks were filled with my physical recovery as we returned shower gifts and wrote thank-you notes. The nursery door remained closed.
A flood of vulnerability rushed in, slapping me with the reminder not to take anything for granted.
It was all so unfair. Finding a funeral home and writing an obituary for a baby we only knew through her kicks. Planning where we'd bury our daughter while my body started producing milk that was supposed to feed her.
It could be tempting to dismiss a fetal loss because the baby had never taken a breath outside the womb.
But to stillbirth families, the babies already are part of the family. We didn't have a lifetime of memories with her, but we had a lifetime of plans and promises for her.
That Halloween, I spent trick-or-treating hours in tears while Mike answered the door. It was just a few weeks after Addison's Oct. 6 due date, and we were supposed to be parading our newborn pumpkin around the neighborhood.
We couldn't look at it much at the time, but we treasure the memory box we received at the hospital, including clay impressions of Addison's footprints and a lock of her dark brown hair.
• • •
Tragedy and loss leave people searching for the right words. Truth is, even we didn't know what the right thing was to say. We simply took comfort in knowing people were thinking about us and praying for us.
If loved ones face a fetal loss, don't avoid them because you're not sure what to say. Acknowledge their loss and the life of their baby.
We were pretty open about our story on Facebook. In return, it felt like the love we received from each family member or friend helped take just a tiny bit of the pain away because we knew they cared.
I often wear a small gold pendant with the letter “A” on it that arrived in the mail soon after from a friend. It was the perfect gift.
Gifts of food helped, too, for those grief-laden days when we didn't have the energy to plan meals. Kleenex boxes aren't a bad offering, either.
I could see tears well in the eyes of women who knew our pain from their own losses. They were all around me—a friend from church, the dental hygienist who cleaned my teeth, the massage therapist we saw.
Hearing from those people who understood our grief provided comfort and hope. We attended a couple sessions of a support group at St. Mary's in Madison for families who suffered fetal/infant losses. Though it was hard to hear more painful stories, we no longer felt alone while hearing others share their versions of thoughts that were in our heads.
The unexpected things, though, could quickly turn a good day upside down, such as a free starter kit of baby formula in the mailbox. Bam!
• • •
The feeling of wanting to be pregnant right now quickly took over. I knew, however, that I had to take time to grieve. Another baby wouldn't replace Addison.
It also felt like a small window had opened into the lives of those struggling with infertility, another unspoken pain.
The timing of a subsequent pregnancy depends on several factors, including the woman's age and type of delivery, Stafeil said.
Waiting six to 12 months is reasonable for a normal delivery, he said, but women who have c-sections ideally should wait two years.
“Most patients don't want to wait that long,” he said.
For me, taking in the thought of waiting a year made me feel like I was standing at the base of Mount Everest.
Sadness and even anger leaked out as we watched friends announce their pregnancies. I wanted to scream at people who assumed they would have healthy babies simply because that's how they thought pregnancy works.
• • •
Fathers can be forgotten in the pain of a fetal loss, but they suffer, too. I worried that Mike would bottle his feelings, trying to be strong for me.
One sleepless, fidgety night sent us to the doctor for an answer to the chest pains he was feeling. The stress for him came out for a brief time in anxiety attacks.
I often reminded myself that everyone grieves differently, and he wasn't going to handle it the same way I was, and that was OK.
One of Addison's positive impacts on our lives was bringing her dad closer to God and strengthening his Christian faith.
Those devastating words from the nurse in the triage room instantly made us stronger as a couple. We often wondered how couples without a strong foundation make it.
• • •
Until you're sitting in the genetic counselor's office getting a refresher on your high school genetics lesson, you take for granted the millions of tiny miracles that ensure a healthy baby. A few months after Addison's birth, we met with Stafeil and a genetic counselor to discuss “why” and the risks of another pregnancy.
We'll never know exactly why Addison died, but doctors say there was nothing we could have done to prevent it.
Addison had signs of Weaver's syndrome, a rare disorder associated with rapid growth. Minor heart and kidney issues also were concerns earlier in the pregnancy. None of the numerous tests afterward gave a conclusive answer.
For our answers, we turned to our faith. Our belief that it was part of God's plan guided us, as did the words our pastor read to us in the hospital from Romans 5:1-5. The verses say, in part, “suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us.”
We fell into the half of stillbirth cases that lack a cause, Stafeil said.
“That's the frustrating aspect of medicine,” he said. “Patients, they want answers. Why did this happen?”
Known causes include birth defects, placental problems, poor fetal growth, infections, chronic health conditions in the pregnant woman and umbilical cord accidents.
Underlying health problems of hypertension and diabetes are two of the most common medical complications associated with a higher risk of stillbirth, Stafeil said. From his perspective treating higher-risk patients, Stafeil said obesity has become more prevalent, increasing the risks of complications. In his 12 years of practice, he's noticed a big difference in the number of overweight expectant moms.
“How do you change that? You can't just tell someone in the first trimester, 'Lose weight,'” he said.
Prenatal care is important, but not all women see their doctors, he said. A preconception counseling visit for a subsequent pregnancy often can show no underlying causes, he said, as was true in our case.
• • •
Five and a half months after Addison was born, joy filled our hearts when we learned I was pregnant. Fear would come later, but for that moment, it was pure happiness.
The risk of having a second stillbirth is 1 percent to 2 percent, Stafeil said. Though the chances are low, Stafeil said, it happened for the first time with one of his patients earlier this year.
The increased frequency of doctors appointments, ultrasounds and third trimester nonstress tests that monitored our baby's heartbeat helped reassure us—to a point—that we had a healthy baby. It was easier to relax in the days after an ultrasound, but weeks later, the fear that something new could be happening would creep back. The thought of losing another baby was unbearable.
I also feared how I would react if our baby wasn't another girl. While I was grateful for any healthy baby, the life I had already envisioned was one raising a daughter. Missing out on that would have led to another round of grief.
The question “Is this your first?” comes often from strangers.
I remember only a few times when I answered “yes” to simplify the exchange; the guilt still washes over me.
“Sort of” is how we often answer, adding that our first daughter was stillborn.
Doctors helped us make a plan to be induced at 39 weeks—a week before our due date—to reduce late-pregnancy complications.
We believe our angel helped her little sister arrive on her own two days before induction, safely and quickly, just an hour after we reached the hospital. On Oct. 8, 2013, we welcomed Macy Grace, a beautiful, healthy girl who was born a year and two days after Addison's due date.
The nursery door remains open now. Gifts intended for Addison are in good use, and Macy is wearing a closet full of clothes from our rummage sale efforts two summers ago.
Macy will never replace our first daughter, but she helps ease the pain. Not a day goes by that we don't think of Addison, and we'll still grieve the milestones we should have had with her.
We can't count our blessings enough. Thanks to our faith and strong support system, Mike and I know our road on this journey has been easier than those of many others who have faced this tragedy.
Even though the tiny heart beating inside you stops, somehow you have to find a way to keep yours going.
A new team of area health professionals is set to begin reviewing all fetal and infant deaths in Rock County. “What we're really after are: What kinds of things did we learn about our community? Are there gaps in service? Could we as a community have filled the needs of this family better?” said Janet Zoellner, nursing director at the Rock County Health Department. Read more ...
—Bereaved Parents of Madison, a support group that meets the third Thursday of the month at St. Mary's Hospital in Madison. Contact Molly Crossen at 608-225-6088 or firstname.lastname@example.org. The group also has a closed page on Facebook.
—Mikayla's Grace, an organization to support families with babies in the neonatal intensive care unit and those who experience deaths of infants or pregnancy losses at Wisconsin hospitals. Visit mikaylasgrace.com.