GREELEY, Colo. — They called the pregnancy a gift from God.
Sandy and Tim Marvin of Greeley endured five years of fertility treatments before they worked, and they lost Regen after eight weeks in 2009. After that, life and a diminishing desire for more heartbreak made them give up, half-heartedly.
On the back of their mini-van, they posted a sticker with her name that said they were the proud parents of an angel. Even though they desperately wanted one of their own, they accepted that it probably wasn’t going to happen.
This pregnancy, in 2014, was a huge, wonderful surprise. When she found out, she was already nine weeks along. It was perfect. The scary part was over. Given that, she allowed herself to get excited about it.
Still, she was terrified. What would happen, she thought, if she lost this one too?
BETTER FOR SOMEONE ELSE
When Melanie Cyphers heads out to talk to the mothers, she brings a notepad, a recorder and a box of Kleenex.
Cyphers works for the Weld County Department of Public Health and Environment, and she specializes in infant, fetal and fertility health. As a part of her duties, she also helps run two committees of health specialists and community leaders who want to solve a perplexing and disturbing problem.
Weld County’s infant mortality rate is bad enough that Cyphers and others say it’s “in the toilet.” That’s especially true when you compare it to Larimer and Boulder counties, reported The Tribune (http://bit.ly/2ct9EGW). Twice as many infants die in Weld as in those counties. The committee meets once a quarter to figure out the causes. The mothers, Cyphers said, are the place to start.
Cyphers meets with mothers who lost their babies either before they were born or when they were infants. She asks them all the same questions. What were they eating? Were they smoking? Drinking? Did they get enough rest? She’s learned how to ask them in a non-judgmental way. She’s even empathetic. She’s a mother too. That’s why she brings the Kleenex.
“I wind up bawling my eyes out with them,” Cyphers said.
But the information she gathers from them is important. If they didn’t agree to speak to her, the committee would have no way of establishing some kind of pattern that could hold the answer to Weld’s troubling fetal and infant death rates. They could also answer the questions they ask of themselves as well. How could they have prevented it? How could we have supported this family better? What information do we need to get out there so this doesn’t happen again?
“It’s an honor to be invited into their homes and their lives,” Cyphers said. “They trust you with that. They all have it in their mind that they want it to be better for someone else.”
In 2010, Daphne Rommereim-Madden with Westlake Family Physicians was disgusted with Weld’s infant mortality rate.
It wasn’t just the 25-30 babies dying before their time every year. Physicians like her considered infant mortality rate a major indicator of a community’s overall health, just like teen pregnancy or drug and alcohol abuse. Something was wrong with Weld, in other words, and as a doctor, it was her job to make Weld well. It also seemed like lowering the rate was an achievable goal. There were some impressive turnarounds in places such as Florida, thanks in part to the work of leaders who gathered to go over cases.
Mark Wallace, a physician and the director of the Weld County Public Health and Environment, agreed it was worth a try. He helped Rommereim-Madden gather some data to justify the health department’s time and resources to solving the problem.
It took a couple years, but that data clearly showed they needed to do something. Weld’s infant mortality rate — measured by the number of infants from birth to one year who died for whatever reason — was even worse than the U.S., and the U.S. ranked 31st among developed nations. Weld’s rate was 7.2 per 1,000 births. The U.S. was 6.1 and Colorado was 6.0.
But when Rommereim-Madden looked at Larimer and Boulder counties, the rate became much more discouraging. Larimer’s infant death rate was 3.2. Boulder’s was 3.0.
It was true Weld had a greater rate of those living in poverty than those counties, and those living in poverty struggle with more health problems for a number of reasons.
“But we’re not as far apart as you might think,” Cyphers said. “We definitely shouldn’t be double. We shouldn’t be as bad as we are with the resources and even the demographics we have.”
They came up with the idea of two committees. One would go over cases and search for patterns, and the other would figure out how to address those problems. Both began pulling people together in 2012. They included representatives from funeral homes, the Greeley City Council, the health department, the United Way, Ruth Alles, North Range Behavioral Health, the Weld County Coroner and Sunrise Community Health. It would include doctors, but the committee wouldn’t be dominated by them. The idea was to hear from those who could look at the overall statistics and see trends that, quite frankly, the medical community and the health department were missing.
Both committees began meeting quarterly in 2013, looking at past deaths from information the grieving mothers shared with Cyphers and seeing if they could find an answer or two or three. They acted as volunteers, with a tiny budget, and tried to work on it when they could outside of their jobs.
Four years later, they’re still meeting, and in many ways, they’re still searching for an answer.
“It’s slow,” Cyphers said. “We work through a fairly detailed questionnaire, and then we put all that information in a presentation to the committee, and as a group, we analyze it. That’s one death.”
That’s why it’s hard to find a pattern. The chances of an infant death do increase in families struggling with poverty, but those aren’t the only families suffering losses.
“It’s not just one sector,” Cyphers said. “It’s everything. It’s the uninsured and the insured. It’s not just the poor people or the migrants. It’s everyone.”
The pattern’s been the same. Cyphers interviews a mother, they review the information and try to find a pattern. If they can, they design a program to do something about it.
They’re not looking for something in the water. They doubt they’ll ever find something new. But maybe they can refocus their educational efforts. Maybe they can recommend to physicians that they talk to their patients about something specific. Maybe they can even focus on women who aren’t necessarily trying but may become pregnant. What are they doing, for instance, to keep themselves healthy? Cyphers said those on the committee call that the ripple effect.
Sometimes it works, and there are easier answers. They had a cluster of infants pass from Sudden Infant Death Syndrome. From 2012-14, they had four. In 2013, she held a news conference and drew up materials to infant care providers. They didn’t have any deaths from SIDS in 2015. They’re not claiming their efforts were the reason — and they’ve had a couple babies die from SIDS this year — but they also wish all interventions and answers came that easily.
That death rate, after all, developed over decades. They don’t want to take decades. Their goal is to lower the death rate to 4.5 by 2020.
“We need to be patient with the process,” said Rommereim-Madden, the physician.
“I have trouble with that,” she said.
At one of the ultrasounds, doctors told Sandy the baby was a little small. She blanked out. Tim took over, as he did many times during her pregnancy, asking questions, and doctors prepared them to have the baby early.
Despite her history and the warning signs, Sandy still felt unprepared when, at 23 weeks, doctors told her they couldn’t find her daughter’s heartbeat. She knew it was over. She couldn’t see the blood rushing through her baby’s body on the ultrasound. Another doctor, 9 months pregnant, came in with her huge belly and searched, desperately, for the heartbeat. She couldn’t find one either.
She delivered Rhea stillborn. She looked her over before they took some pictures with Tim and with her of their little girl. She didn’t expect Rhea to look like a real baby. Instead, Rhea looked like a combination between the two of them, just what you’d expect from their daughter. She had Tim’s nose and his fingernails and his weird turtle toes.
The shock she felt from Rhea’s death was every bit as stunning as her conception.
SUPPORT FOR PARENTS
Ruth Alles did what she could. She started a support group for parents who lose their babies, called HUGS, and she organized A Walk To Remember, an event where parents could gather once a year to remember their lost little one.
And yet, even today, after she’s retired at age 67, she’s happy to stay involved with the Community Grief Center, 4650 20th St. in Greeley.
Many years ago, parents who lost infants or had stillborn babies were encouraged to ignore what happened. Others rarely acknowledged the loss. The thought of, say, taking photos with their baby was considered outrageous, and yet, those few hours are all a parent has with their child, Alles said. Even with her groundbreaking efforts to give parents a chance to acknowledge and grieve their lost babies, there probably wasn’t enough being done to help parents. The Grief Center is another way to help with that. There are even special groups for mothers who have lost children and another for those who have miscarried or had babies that were stillborn.
“I’m sure hoping it’s going to help big time,” Alles said. “It will be one common ground. They won’t have to go out and search for others and their individual groups around the community.”
Cyphers believes the committee’s work, and the ripple effect they all work for, may have helped in a small way to build the grief center. That work was another way for people to understand the pain of losing a baby and the need to address it.
The grief center, which recently celebrated its grand opening, is a place to help with all kinds of grief, at all ages, from seniors who lost a longtime companion to children dealing with the loss of a parent. But it should be a godsend for grieving parents. That pain is universal, at any age: One mother attended who was 80 years old and lost her 60-year-old son.
“Society is not good at grief,” said Debby Baker, a clinical psychologist who acts as the grief center’s executive director. “You’re supposed to move on after a couple months. But you’re forever changed.”
Alles’ A Walk To Remember, the committee’s efforts and now the Grief Center seems to make it OK to have other special events for parents to remember their babies. Sunset Memorial Gardens had the third annual Children’s Remembrance Balloon Release during Memorial Day weekend. That wouldn’t have happened 20 years ago.
One of the mantras of the grief center is that everyone grieves differently, but there are some specific barbs that parents who lose infants or unborn babies face, Baker said.
They have unfilled dreams, Baker said. There are few, if any, memories of the child, which helps explain why, in the old days, parents were encouraged to pretend they didn’t exist: It’s almost like they weren’t there.
There’s also a lingering guilt there that they should have done more.
A FEW CAUSES
Despite all the frustration the committee feels about its inability to find the one true cause of Weld’s bad infant death rate, they have narrowed down a few causes:
— Care among mothers tends to be fragmented, meaning they might go to the ER for one issue, urgent care for another issue and then see their primary care provider for checkups. One doctor who treated all the issues may be able to identify a larger problem, Rommereim-Madden said, rather than just treat symptoms. But this is a problem with our overall health care system, and it’s something that affects many patients, not just doctors. And though it’s true those without insurance visit the ER more, it’s also true that this is a problem patients from all economic circumstances face.
There also needs to be a better way for all systems of health care to communicate with one another.
— The need for healthy lifestyle education remains high, but again, this is not just a problem mothers face. Few people know how to eat well, prepare healthy meals every night and exercise regularly.
— However, maybe the idea of pre-conception counseling is a good one. If a woman is even considering having a child, a visit with a doctor about her lifestyle would be a good idea. Does she smoke? What’s her diet? Does she exercise? Family planning may have as much of a factor as any other in terms of having a successful pregnancy.
— This is related, of course, but it also shows a real need for prenatal care. The sooner, the better, and that’s why family planning is so important.
— Breastfeeding remains an important part of caring for a baby. The health benefits for it are numerous, and it’s free as well.
— Safe sleep tips remain important as well to help reduce the rate of Sudden Infant Death Syndrome.
— Safe, adequate and affordable child care is more of a luxury than it should be. The best places have waiting lists and may be out of reach for those with lower incomes, and yet, leaving an infant with, say, a boyfriend or even some family members may be dangerous.
— Navigating the health care system remains confusing to the point where some new mothers may not get the care they or their babies need just because they don’t know where to go or who to see.
Many of these are easily answered with the right information, but getting that information in the hands of new parents who need it is the trick, Cyphers said. It’s one of the more frustrating parts of her job.
And yet, for all the frustration, there is also hope. Weld’s death rate, after all, used to be 7.2 per 1,000 babies. Since the committee got together, that’s dropped to 5.2. That’s still worse than Larimer or Boulder counties. But it also is, literally, dozens of babies in Weld now alive who possibly wouldn’t be.
“Is that really an effect of this review?” asked Rommereim-Madden. “It’s hard to say. But maybe it’s working. Cross your fingers.”
There really is hope. Occasionally, Cyphers will hear from the mothers she once interviewed and cried with, and the news is much better, even uplifting. Sometimes, with their letters or emails, they’ll include a photo of their new baby.
There are still days Sandy wants to stay in bed all day. But she can’t. She watches four nieces and nephews, ages 6, 5, 4 and 8 months, and seven dogs. Her days are full.
The kids are a distraction. The dogs are a distraction. They keep her from getting lost in her own mind. They get her out of bed on the bad days.
They display the photos of Rhea in their hallway, on the way to the bedroom, with an inscription that mingles among them: “Life isn’t about waiting for the storm to pass. It’s about learning to dance in the rain.”
Sandy won’t say she’s done trying. She knows the odds may be slim. She’s 34. She’s already been through so much pain. It still hurts every day. But she believes her pregnancy with Rhea wasn’t just a gift from God. It was a sign.
“It was a sign from him telling us, ‘Don’t give up yet,'” Sandy said.
Information from: The Tribune of Greeley, Co, http://greeleytribune.com