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Healing Hope

Saving babies means thinking inside the box

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  • 19 min to read
Babies

Photo from Pixabay

Author's note: This is not a sad story. 

It's easy to think that at first blush. The topic of infant mortality can make people uncomfortable; it's terrifying to think about as a parent and a seemingly impossible issue to tackle in healthcare.  

But this is not a sad story. It's a story of hope - of delving into the underlying causes of infant mortality and looking to innovative ideas to provide a future for these babies. It details the tedious fight many in Richland County and beyond have been fighting for years before this piece was published. 

Infant mortality is a heartbreaking crisis that, with evidence-based intervention, education and endless hope for the future, is continually closer to being eradicated. That's what this story is all about. 


Part 1: Infant mortality a complex problem locally and nationally 

"Void"

There are seven plots of land in Mansfield Cemetery where babies are buried.

Scattered across the cemetery’s expansive grounds, these sections play host to hundreds of tiny coffins. They’re easy to spot, often decorated with stuffed animals or balloons commemorating birthdays that will never come. Brightly-colored children’s toys contrast sharply with the dull granite headstones.

One stone in the cemetery is etched with the name of 34-year-old Shanay Crawford’s infant daughter, Jesselyn – born May 17, 2005 and died July 20, 2005 just after her two-month milestone. Hers is one of the few headstones with the luxury of having a death date separate from her birth date.

Jesselyn

Shanay Crawford holds a portrait of her angel baby, Jesselyn.

Jesselyn was born with a cleft palate, the fourth most-common birth defect in the United States, and jaundice. Crawford remembers calling her daughter’s doctor with concerns about her baby continuously losing weight and projectile vomiting. She made an appointment with a gastroenterologist.

“As a mom, you know your kid and you just get this feeling,” Crawford said. “I remember feeling like this was never going to end, and I didn’t think she was going to make it. But as a mom I’m doing whatever I can to make sure my feelings are wrong.”

Jesselyn died before she made it to the doctor. She stopped breathing in her sleep while taking a nap at daycare. Cause of death was determined as SUID – sudden, unexpected infant death.

“It was surreal,” Crawford remembers. “When your baby passes, in your mind you want the whole world to stop and mourn with you.”

No parent expects the hopes and dreams they have for the tiny person they created to end in a tiny grave. But this is a reality for hundreds of parents in Ohio and Richland County whose children become a victim of infant mortality – the death of a live-born baby before his or her first birthday.

Between the years 2005 and 2015, there were 14,877 live births in Richland County and 108 deaths, according to the Ohio Department of Health. Jesselyn is part of that statistic.

This equals an infant mortality rate of 7.3 infant deaths per 1,000 infants born – only slightly lower than the state’s 10-year rate of 7.6.

Rate is calculated as the number of babies who died during the first year of life per 1,000 live births. A 10-year aggregation is used due to Richland County's low annual birth numbers rendering a yearly infant mortality rate statistically invalid.

Comparatively, the United States has an infant mortality rate of 6.1 per 1,000 live births. However, stacked against other wealthy countries, the nation’s rate is abysmal; a study by the Center of Disease Control (CDC) compared the U.S. infant mortality rate with 26 other wealthy European countries. The U.S. was ranked dead last.

Why are our babies dying at such an alarming rate?

“It’s a socioeconomic problem,” said Peggy Sutton, former public health nursing supervisor at Richland Public Health. “We’ve lost jobs, we have a high rate of public assistance in Richland County. And it’s a statewide issue because of economic and racial disparity.”

The problems in Richland County trickle down from fundamental problems nationally. For example, national statistics say states with the highest level of infant mortality also have high rates of poverty. In 2015, 15.9 percent of the population in Richland County was living in poverty, according to the U.S. Census Bureau.

These “big-picture” problems directly affect three of the leading causes of infant mortality in Ohio and Richland County: Child Fatality Reviews in Ohio show that 46.6 percent of infant deaths in 2013 were due to premature and pre-term births, 15 percent of infant deaths were due to sleep-related causes including SUID, asphyxia or other undetermined causes, and 13.8 percent of deaths were due to serious birth defects.

These numbers have mobilized Richland County into taking action. Local doctors Mark and Sarah Redding have created the Community Health Project and “Pathways” model to address risk factors that lead to infant mortality. A partnership between Third Street Family Health Services, OhioHealth and the March of Dimes brought a Mom & Baby Mobile Unit to reach pregnant women with limited access to healthcare. The local infant mortality task force hosted a community forum in October 2015 to illustrate the serious nature of this problem in the minority community.

Richland Public Health also leads a number of efforts to combat the causes of infant mortality. For example, Public Health Nurse Jennifer Crotty heads the organization’s prenatal home visit and newborn home visit program, aimed at assessing a mother’s needs.

“We talk about taking prenatal vitamins, eating correctly, not smoking and drinking,” Crotty said. “We also start safe sleep education there.”

Education extends to making mothers aware of the services available across the county to encourage healthy pregnancies and healthy babies.

“I went into the home of a woman who has lived here for two years and she didn’t know half the services she could get,” Crotty said. “Sometimes mothers don’t know what services are available, and sometimes they don’t necessarily know what they need to be doing to take care of themselves.”

The “ABCs of Safe Sleep” campaign is Richland Public Health’s biggest educational effort to combat infant mortality. They encourage babies to sleep alone, on their backs and in a crib with a firm mattress.

In 2015, the Ohio Department of Health released its annual Child Fatality Review for the years 2009 through 2013. It determined that 836 infants died in a sleep environment - 16 percent of the total 5,174 infants to die over the five-year period in Ohio.

Of the 836 infants who died in a sleep environment, 26 percent (219) of the infants were asleep in a crib or bassinet, as is recommended. However, 56 percent (471) of the deaths occurred in adult beds, couches or chairs.

The numbers don't lie, and yet it's still not enough to convince some parents to put their babies in a safe sleep environment. The American Academy of Pediatrics recently released a study that video-recorded infant sleep patterns - most parents, even when aware of being recorded, placed the infants in environments with established risk factors for sleep-related infant deaths, including positioning the infant on their side or stomachs, on a soft sleep surface, with loose bedding or bed-sharing.

Still, Richland Public Health's safe sleep campaign is a tangible step in a fight that often seems futile - especially when up against a barrage of socioeconomic factors that can prevent mothers from obtaining even the most basic care to keep their babies alive. 

“We’d love to drive mothers to all their appointments and make sure they get prenatal care,” Sutton said. “We’d love to prevent all congenital disorders, but we can’t. What we can do is educate people on the right way to put your baby in bed.”


Part 2: Local doctors aim to change the fate of babies born into poverty

"Clover"

Imagine a pregnant woman being forced to choose between carrying a healthy baby, or her addiction to drugs.

This is a reality for many patients of Lavonne Downing, a women’s health nurse practitioner at Shelby OB/GYN, part of Third Street Family Health Services. Downing’s patients are often young women who never graduated high school, who struggle with addiction or poverty, or who face a future as a single parent.

These patients are a sampling of the socioeconomic issues that plague Richland County.

“The lives of a lot of people in Richland County are just hard,” Downing said.

Downing is the first point of contact for many pregnant women in Richland County. A prenatal examination is only part of her job – she is also tasked with learning the underlying information about a mother’s socioeconomic status, or her hidden struggles with addiction.

Fortunately, her patients are almost always brutally honest.

“There’s a lot of poverty, there’s no industry so there are no jobs and no way for them to get a car, a bus pass or get their prescriptions,” she said. “It’s just hard all the way around.”

According to the U.S. Census Bureau, in the year 2014, 15.9 percent of the population in Richland County was living in poverty. That same year, 13.3 percent of the population had not graduated from high school, and 10.9 percent of the population was without health insurance.

These numbers may seem unrelated to the county infant mortality rate, but they make a difference. Infant mortality is an important gauge of the health of a community, as infants are uniquely vulnerable to the many factors that impact health, including socioeconomic disparities.

Much of the high infant mortality rate nationally can be attributed to babies who die after leaving the hospital. According to the Ohio Department of Health's Child Fatality Review in 2015, 69 percent of the 5,174 infants lost between 2009 and 2013 died within their first month of life, and 32 percent died within 29 days to a year. In other words, babies are mostly fine while they’re in the hospital and during their first days at home – but as socioeconomic factors creep in, that changes.

Without health insurance, pregnant mothers feel they have no access to prenatal care, leading to birth defects. Without employment, pregnant mothers cannot afford insurance for healthcare or even a crib, potentially leading to sleep-related death. Without addressing the underlying issues that contribute to infant mortality causes, it’s a dangerous domino effect.

In particular, a lack of education locally is Downing’s concern, and for good reason. A study by the Institute for Health Metrics and Evaluation shows infant mortality drops in proportion to the years of schooling a woman obtains. Educated women, the study says, make wiser choices about hygiene, nutrition, immunization and contraception.

“We have a lot of young people who didn’t graduate from high school, so we have a lot of not-completely-educated youth in the county who don’t have a lot of role-model support,” Downing said.

Another trait of low-income, low-education communities is a battle with drug addiction – a problem Richland County is all-too familiar with – that can lead to birth defects and premature births. Downing’s is one of only six OB/GYN offices in the county.

She estimates that Third Street OB/GYN sees the highest proportion of drug-using mothers. Third Street also uses Medication Assisted Treatment to transition pregnant women up until their 28th week of pregnancy.

At the state level, Ohio launched the Maternal Opiate Medical Support Project (MOMS) in 2013 to link pregnant women struggling with addiction to treatment associated with improved neurocognitive outcomes in infants of opiate-addicted mothers. The state also began studying the effects of Neonatal Abstinence Syndrome in babies born addicted to narcotics.

“When people are on drugs they’re worried about something else. They’re not focused on their pregnancy,” Downing said. “They know when the time comes someone is going to deliver their kid, and a lot of times they’ll think if their baby comes out fine it’s OK to do it the second time.”

Still, Downing’s biggest concern goes back to that very first visit – or rather, encouraging mothers to attend that visit. Downing prefers mothers be seen by a doctor as soon as they know they are pregnant, yet she consistently sees mothers coming for their first visit anywhere from 12 to 25 weeks into their pregnancy.

According to the Ohio Department of Health, in 2010 only 73.1 percent of babies born in Richland County had prenatal care within the first trimester of pregnancy.

“We have a huge problem of late entry into prenatal care in Richland County,” Downing said. “It seems like a lot of these girls have transportation issues, or maybe didn’t know it was even important and made a difference to get early prenatal care.”

The number one reason Downing sees for lack of prenatal care, however, is lack of insurance. Third Street offers “presumptive eligibility” that provides patients with a Medicaid card before they leave the office if they qualify. The point being, they would prefer a doctor take care of an expectant mother and work out the insurance details later.

The strongest case in favor of prenatal care lies in the potential to identify health problems early. More important than just the initial visit is the need for consistent, routine evaluations to look for emerging patterns.

“If someone has chronic health problems we can identify that and get them the special testing and referrals they need,” Downing said. “There are lots of opportunities for us to catch something early, and you might find problems that can be managed and planned for ahead of time."

The effect of the “hard life” led by Richland County women on the outcome of her pregnancy should not be understated. For Ohio Sen. Sherrod Brown, it all begins with a zip code.

“Attached to your zip code is housing, it’s education, it’s nutrition, it’s medical care – all those things we inflict on working class and poor or low-income people,” Brown said. “These are all things we have to deal with.”

A native of Mansfield, Brown is no stranger to battling infant mortality rates in Ohio and nationally. In 2014, Brown’s Sudden Unexpected Death Data Enhancement Act was signed into law by President Barack Obama. The legislation enhances current methods of data collection that will enable doctors and researchers to better track and prevent infant losses, as well as require the Secretary of the Department of Health and Human Services to disseminate this information to educate the public.

The senator has often visited his hometown to see the subjects of his legislation firsthand. He faults indifference and lack of interest at the state level for Ohio’s low ranking in infant mortality rates.

“It takes a commitment to public health, to housing, to public investment,” Brown said. “We spend a whole lot of tax dollars putting people in prison and not enough on preschool or early childhood education.

“You start with giving people clean places to live, with much better exposure to education for low-income children,” he continued. “Invest in children at that age and their health and environment, and they will grow into healthy, educated adults.”

Brown is also passionate about the role of community health workers in combating infant mortality at the local level. He successfully offered a provision to the healthcare law creating a grant program that integrates community health workers into programs focusing on solutions for communities with poor prenatal health.

The model for that provision was the Mansfield Community Health Access Project (CHAP), founded by Drs. Mark and Sarah Redding. Their “Pathway” model of connecting women showing risk factors related to infant mortality with community resources has been wildly successful since its introduction in 2004, and replicated in communities across Ohio.

“It’s not just connecting an expectant mother to prenatal care, but understanding all her risk factors – housing, food, clothing, behavioral health – and then making sure to address each of those risk factors,” said Dr. Mark Redding, Quality Improvement Director for CHAP. “Focusing on the risk factors is the eye of the storm.”

What makes CHAP particularly effective is its use of community health workers as “intermediary mentors” – individuals selected from the population being served. CHAP is praised in the book Bridges Out of Poverty for this strategy, noting the workers bridge the distrust of doctors and “outsiders” within impoverished parts of Richland County.

Redding echoes Sen. Brown’s bird’s-eye view of infant mortality, emphasizing the importance of a comprehensive care approach for at-risk pregnant women. He cited a study in the Maternal and Child Health Journal showing that when a comprehensive approach was taken to an expectant mother addressing health, social and behavioral health risk factors, low birth weights were reduced by 60 percent.

“Low birth weight is the single most closely-tied outcome measure to infant mortality,” Redding explained.

A comprehensive healthcare approach saves the county not only in human suffering, but in real dollars. According to Redding, the study shows that for every dollar invested in programming similar to the Pathway model, more than $5 is earned in long-term expenses that would be avoided.

“If our health and social service system was all about identifying and addressing risk factors in a comprehensive way, research is showing we would have dramatically better outcomes,” Redding said. “Especially focusing on people at risk – 5 percent of the population represents 50 percent of the cost in our health system.”

The challenge comes in developing strategies for effective, evidence-based care coordination that addresses every risk factor. The Pathway model, for example, sends expectant mothers on as many as 20 different “pathways” addressing housing, adult education, employment or transportation. Once these risk factors are resolved, the result is a healthy pregnancy and baby.

What’s happening now, Redding explained, is often times only one or two risk factors are identified and addressed.

“If we do that we’ll continue to have the worst outcomes in the developed world,” Redding said. “We have a system of care that specializes in dealing with one or two risk factors, but we’ve not been as good as other countries at seeing and treating the whole person.”

According to Bridges Out of Poverty, those living in poverty often believe in fate. They believe they cannot do much to mitigate chance.

“A lot of patients feel like life is done to them, that they don’t have a lot of control over how things go in their life,” Downing said. “A lot of low-income people feel this is their lot in life and this is what they have to accept.”

Occasionally Downing sees the light bulb go off in a patient’s mind, connecting that changes in their behavior can keep their baby safe and healthy. But only occasionally.

“Some of them see there are plenty of places to go for help, and seeing them take advantage of that is rewarding,” she said. “But honestly that doesn’t happen as often as we would want.”

It’s a frustrating process, but one Downing feels compelled to keep after – to reach more people, one patient at a time, and continue to look for solutions.

“Sometimes you feel like you’re beating your head against a wall,” Downing said. “Some patients are going to be receptive to what you’re saying because they just didn’t know or didn’t understand, so we do reach some of them. But some of them you just don’t. Sometimes they just don’t care.

“This is going to take a long time for Richland County to make a big jump; we’re going to affect it by slow and steady progress. I hope people understand that.”


Part 3: Keeping babies alive requires collaboration, creative thinking

"Phoenix"

When looking for a safe sleep environment for a newborn baby, probably the last thought to come to mind is a cardboard box.

In fact, a 2013 survey showed that 40 percent of parents in a United States test group felt uncomfortable putting their baby in a box to sleep – even a box covered with adorable cartoon animals.

But a follow-up to that survey, distributed by The Baby Box Co., showed that after two months of a baby box in their possession, 80 percent of these same parents were using the box as a sleep space for their baby. Less than 5 percent were not using it for safe sleep.

It’s exactly what founder Jennifer Clary envisioned as the safest sleep option for an infant.

“When I first started out, infant mortality rates were our driving factor, our driving star,” Clary said. “It’s a bassinet alternative, a safe sleep environment that doesn’t require assembly.”

The Baby Box Co., based in California, is modeled after a Finnish tradition that encourages safe sleep. Studies have shown the boxes have helped Finland achieve one of the lowest rates of infant mortality in the world, and the baby box movement has become increasingly mainstream in the U.S. as more and more families are turning to this safe sleep option.

Keeping with the ABC’s of safe sleep – alone, on their back and in a crib – the box includes a firm mattress with only enough room for baby. Each box also comes filled with baby essentials like onesies, burp cloths, sleep sacks and various baby toys.

Still, Clary considers The Baby Box Co. to be a program, not a product. Favoring a comprehensive approach, she considers the box to be an educational and engagement tool to promote safe sleep education.

“We are an education program first, and a baby box program second,” Clary said. “Just the box isn’t going to help infant mortality; we feel very strongly that education is what’s going to reduce infant mortality.”

To that end, Clary began Baby Box University as a companion to The Baby Box Co., an educational program about pregnancy and parenting available to all expectant mothers and their families. Baby Box University is focused on maternal health and early child development, and every baby box from the company comes with a membership card.

It is this program that Clary hopes to roll out in local hospitals across the country through community partnerships. By entering into an agreement with The Baby Box Co., every expectant mother in a partnering hospital would receive a baby box and a membership to Baby Box University before leaving the hospital.

“In our research, universal initiatives benefit more than targeting specific members of the population, like parents at a certain level of poverty or certain demographics,” Clary explained. “If you distribute to everyone equally regardless of economic status, the people who are most vulnerable are more likely to use the intervention properly.”

The program was recently introduced at Firelands Regional Medical Center, just north of Richland County in Sandusky. Alice Springer, director of development at Firelands, said theirs is the first hospital in Ohio to offer baby boxes.

“Last year, we had two families come to us looking for help because of infant mortality occurring within their families,” Springer said. “That’s why we were motivated and what got our team researching this.”

Erie County’s infant mortality rate was 8.8 in 2014, higher than Richland County’s rate of 7.3 in the same year. During a strategic planning session last November to address this problem, the idea of baby boxes was introduced. Baby boxes were first implemented at Firelands in February 2016.

The universal distribution proved to be the most effective method for Firelands, according to Springer. Other initiatives in Sandusky were aimed at giving boxes only to underprivileged mothers, but Springer didn’t want it to become the “box of shame.”

“They’re given to all new moms no matter their socioeconomic background,” Springer said. “By and large, everybody takes one. Only two moms have not, but they called back later and we delivered boxes to them.”

It’s too soon to track measureable changes on infant mortality rates, but the morale boost has been instantaneous.

“We put the boxes together as a team-building exercise within our division, and when the OB nurses call us to deliver them the employees are so proud walking through the hospital,” Springer said. “It’s caused quite a stir in our community.”

A similar partnership with The Baby Box Co. in Richland County is, in Clary’s words, “beyond possible.” She ran the numbers – according to Richland Public Health, there are approximately 1,200 births in Richland County each year. If the health department collaborates with The Baby Box Co. education department and utilizes the Baby Box University platform, Clary can provide a baby box full of goodies to every expecting mother in Richland County for a contribution of just $8.25 per unit, or $9,900 per year.

If the health department would choose not to work with The Baby Box Co. as an education partner, baby box units could be distributed independently starting at $12.50 per unit. Payment plans are offered for both scenarios.

“I’d say that a Baby Box Co. program is the most economical, accessible and impactful investment in families and community health outcomes,” Clary said.

Baby boxes are just one possible solution to explore when studying the future of infants in our community. Currently, the health community in Richland County is working to tackle the issue of infant mortality head-on. 

In fact, the Ohio Department of Health’s annual Child Fatality Review for 2015 praised the creation of the Richland County Infant Mortality Community Conversation (IMCC), which organized in 2013 due to the high infant mortality rates in the county.

IMCC has four subgroups implementing recommendations for prevention of sleep-related deaths, prematurity and birth defects, and improving health system performance. It includes healthcare providers, Richland Public Health, the Community Health Access Project (CHAP) and other social service agencies.

A member of the IMCC, Lavonne Downing said simply having representatives from so many county agencies in one room was helpful in itself.

“We didn’t even know about some services of the county until we were sitting across from each other,” she said. “If the medical offices don’t know about the services offered, you might as well not do them. We need to know so we can send people to them. Interaction between the different agencies is lacking.”

Dr. Mark Redding also cited community collaboration as a critical part of reducing infant mortality rates. The Community Health Access Project (CHAP) is a natural partner in collaboration.

“At its best if we’re collaborating in Richland County, the community care coordinators who reach out to these folks at risk end up being an integration point,” Redding said. “They are the navigators who know where everything is, and if they can work as closely as possible with the infant mortality task force and other related agencies, we need to continue that.”

The IMCC has eight official objectives: lengthen the interval of time between births to at least 18 months, reduce unintended and teen pregnancies, promote male involvement in reproductive health, promote early and adequate prenatal care, provide smoking cessation and reduce substance abuse for women of childbearing age, reduce rate of infections in women of reproductive age, develop links to reproductive health needs, and disseminate knowledge on infant mortality in Richland County.

The objectives were broken down into manageable chunks with various agencies tackling individual problems. Downing is focused on preventing premature and pre-term births, by far the leading cause of infant mortality.

“I would like having more all-inclusive practices where everything that person needs to seamlessly get through their pregnancy is right there, like a one-stop shop,” Downing said. “Just having more guidance and more education for the patients so they know what’s there, and then having it more accessible.”

Safe sleep practices are being addressed locally by Richland Public Health. Public Health Nurse Jennifer Crotty said often times the hardest person to convince of the ABC method is the grandmother, who laid her babies on their stomach to sleep and they turned out just fine.

“I tell them it’s been all these years, they’re doing all this research and these are the facts they’ve discovered,” Crotty said. “There are different things you want to put into their knowledge. I can’t tell you how many people I go see and it really impacts them.”

The most tangible safe sleep help offered by Richland Public Health is their “Cribs for Kids” program. If a parent qualifies for the Women, Infants, Children (WIC) nutrition education program, and has no safe sleep environment, the health department can provide a free “pack-and-play” crib.

Similar to CHAP’s high community involvement to provide comprehensive care, Peggy Sutton yearns for the resources to provide every single mother with a newborn home visit.

“It’s evidence-based that if you get in the home and talk to the mom in their habitat, moms ask the questions that need to be asked and you can offer the help,” Sutton said. “To implement that, we need change in the total thought process with everyone thinking that everyone gets a newborn home visit. I think we could make a big difference if we could get into every newborn’s home.”

It’s clear solutions to infant mortality are constantly in the works in Richland County. Still, it’s not an overnight process.

“It’s a little daunting,” Downing said. “We tried to come up with reasonable objectives we could promote within the county that would make a tangible difference. We’re making progress but it’s slow; it will probably take 10 years before we see real, exciting change.”

Shanay Crawford

Shanay Crawford with a portrait of her angel baby, Jesselyn. 

Eleven years after the death of her infant daughter, Shanay Crawford now finds herself part of the solution. She currently works with the Ohio Infant Mortality Rate Initiative as part of Third Street Community Health Workers, an agency of CHAP.

Working primarily with the minority community, Crawford pushes for mothers to go to their prenatal appointments by helping with transportation, food, finances or even education. Her goal is to meet a mother’s basic needs so that focusing on their pregnancy is their top priority.

Occasionally, Crawford works with mothers who have lost their babies. Rather than shy away from cases that hit close to home, Crawford pays it forward by becoming that mother’s support system.

“When my daughter passed, I had so many people around me that loved and cared about me,” she said. “I couldn’t imagine not having that, I would probably still be under a rock somewhere. I want to be able to offer that to other people and share that I had the same experiences.

“Just to know somebody for a second has stopped what they’re doing to be in that moment with you is very important, because you do feel very alone and you feel like nobody else understands.”

Crawford and her two children, 14-year-old Iyiana and 10-year-old Xavier, visit Jesselyn at Mansfield Cemetery to mark holidays or her birthday. She takes special care to clean the headstones of the babies neighboring her own whose parents have moved away or find it too painful to visit.

Though she is missing a child, Crawford firmly believes losing her daughter was in God’s plan. It’s made her family stronger, it’s made her a more appreciative mother, and it’s made her an all-around better person, she says.

“Sometimes I cry about it, sometimes I don’t,” Crawford said. “But I can rest well knowing I took her to all her appointments, when she passed she was in a safe sleep environment, and I know I did everything I could.

“Yes it still happened, but I don’t feel as guilty because I know as a parent I did everything I could.”

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