Not giving up: Infant health in West Virginia, a series in four parts

By WENDY HOLDREN

The Register-Herald

BECKLEY, W.Va. — West Virginia – a state well known for poor health rankings in obesity, diabetes, drug overdose deaths and hypertension — has one of the lowest maternal mortality rates in the country. Mountain State babies, however, do not fare so well.

Shirley Whitt lost her daughter Lillian Avery Whitt, due to complications associated with pre-eclampsia (high blood pressure), looks at a cabinet filled with memory items of her daughter.
(Photo by Rick Barbero)

In 2014, the West Virginia Department of Health and Human Resources Bureau for Public Health reported three maternal deaths, along with 249 fetal and infant deaths.

Nationwide, the Center for Disease Control and Prevention reported infant mortality reached a historic low in 2014 – 5.8 infant deaths per 1,000 live births. West Virginia’s rate in 2014, according to the Bureau for Public Health, was 7.1 deaths per 1,000 births – 22.4 percent higher than the national rate.

A 2013 report from the West Virginia Perinatal Partnership, a statewide association of healthcare professionals and public and private organizations working to improve perinatal health, identified the following reasons for poor birth outcomes in the state: education; high rates of drug and alcohol use; low rates of breastfeeding; high teen pregnancy rates; and high rate of tobacco use in pregnancy; early induction and preterm births; high rate of C-section deliveries; maternal and infant transport; access to quality care, including access to skilled professionals; and obesity.

In 2014, the DHHR Bureau for Public Health Vital Statistics recorded 20,303 live births in West Virginia.

In a report, the DHHR counted 105 fetal deaths, 92 infants who died in their first 27 days of life, and 52 infants who didn’t live to see their first birthday – the majority died because of congenital malformations, disorders related to short gestation or low birthweight.

Lillian Avery Whitt was one of the 92. She was born April 3, 2014 – three months and 20 days before her due date.

Shirley Whitt, of Beckley, was 34 years old when she and her husband, Ryan, found out she was pregnant. They hadn’t planned on having children, but when the doctor confirmed the results of their at-home test, they got excited.

They grew even more excited when they learned the baby’s gender. They were both secretly hoping for a girl.

Whitt was overall in good health. She didn’t drink. She wasn’t overweight. She hadn’t had a cigarette in six years.

A college educated woman, Whitt decided she wanted to go somewhere with only one provider for her prenatal care. She didn’t want to see a rotation of multiple doctors. She believed if she worked with one provider, that person would know the ins and outs of her pregnancy. Multiple doctors, she thought, might miss something. Ultimately, she chose to see a family nurse practitioner in a neighboring county, less than 30 minutes away from her home.

During a standard prenatal screening, a high risk factor for Down Syndrome was found. Whitt was sent to Charleston for an ultrasound. It came back fine. The practitioner ordered a second ultrasound. It, too, came back clear.

A few weeks later, while she was conducting a home-visit for work, she was carrying some bags and she slipped. She remembers landing in a half-kneel position with her left knee on the client’s porch. Out of an abundance of caution, she went to Raleigh General Hospital to make sure everything was OK.

Her blood pressure reading came back high. “One-fifty-eight over something.” She can’t remember specifically. Ryan asked them to check it again.

The American Heart Association says a normal reading is less than 120 for the systolic pressure (the top number which measures the pressure in the arteries during the contraction of the heart muscle). A normal reading for diastolic pressure (the bottom number which measure blood pressure when the heart is between beats) is less than 80.

Whitt’s second reading was lower, but still slightly elevated. The nurse assured them it was because she was panicking about her injury.

“That was the first thing about any kind of blood pressure issue.”

At Whitt’s third ultrasound at 22 and a half weeks, the baby was measuring small, about five days behind normal growth. Her practitioner said the growth wasn’t an issue until the baby started measuring two weeks or more behind.

Not long after the third ultrasound, Whitt started getting really sick. Not morning sickness. That had already passed.

“I was swollen. I remember thinking I kinda got big all at once. My face and everything had swollen.”

The next week, she thought she might have food poisoning. She threw up multiple times. She even had flu-like symptoms.

She went to her doctor, but again, she was assured everything was fine. Normal pregnancy issues.

A week later, on a Saturday, she was shopping at the Charleston Town Center for baby clothes. She went to the bathroom multiple times, feeling the urge to pee, but she produced very little urine.

The next day, she felt worse. She threw up. She had heartburn. She tried antacids. She tried laying down. Nothing made her feel better.

She went to her practitioner the next day, Monday, March 31, 2014. She doesn’t remember having her blood pressure taken during that visit, but the nurse practitioner listened as she explained her symptoms.

“I kind of think she was tuning me out because it sounded like normal pregnancy stuff to her.”

Whitt was sent home with antacids. It didn’t help. She kept feeling worse. Her arm started tingling and her shoulder started hurting.

“I thought I was having a stroke, so I drove myself to the ER at Raleigh General.”

In the ER, they checked her blood pressure. It was high – 158 over 101. The nurse asked her if she had a history of high blood pressure. She said no.

Doctors in the ER determined she had pre-eclampsia – a pregnancy complication characterized by high blood pressure and signs of damage to another organ system, usually the liver or kidneys. Even a slight rise in blood pressure could be a warning sign of pre-eclampsia, according to Mayo Clinic.

She was placed on a magnesium drip to lower her blood pressure and to keep her body from seizing. The ER doctor asked her if she had a preference between Charleston or Huntington. She had to be transferred for a higher level of care.

Cabell Huntington Hospital’s maternal critical care unit sent an ambulance to transport her. She remembers the bumpy ride. She had to lay on her left side in the ambulance to help decrease her blood pressure.

When she arrived, Cabell Huntington doctors reviewed her charts. She was just shy of 24 weeks into her pregnancy, so doctors wanted to keep her pregnant for a few weeks longer if possible. Most health care experts agree 24 weeks is the point of viability for a baby.

“The plan, at that point, was to try to get everything stable,” Whitt said. “They were going to keep me there until the pregnancy was over. The first plan was to get me to 28 weeks.”

If she made it past 28 weeks, doctors still didn’t want her to carry past 34 weeks because of risks associated with pre-eclampsia.

Additional testing halted that plan. Doctors discovered her blood platelet count had dropped and she had elevated liver enzymes. Liver failure.

“They had to take her,” Whitt said. “They wanted to induce me because my platelets were so low. They were afraid I would hemorrhage with a C-section.”

The baby’s heartbeat had slowed, but remained steady. She was losing weight though because blood wasn’t flowing steadily through the cord.

Doctors told the Whitts their little girl had about a 50-50 chance of survival.

On the evening of April 3, surrounded by a team of doctors for both mom and baby, Whitt gave birth to her 14 ounce, 12-inch long baby girl.

“At first, it looked like she was moving, then everything stopped. The smallest equipment they had to work on her was too big. It was ripping her throat.”

She remembers three men approaching her from the right, shaking their heads in unison.

The infant mortality rate in the U.S. has gone down since 1950, when the rate was 29.2 deaths per 1,000 births.

Twenty-five years later, the rate was cut almost in half. In 2000, the rate was down to 6.9 deaths per 1,000 births.

Each year since, the rate has either remained the same or slightly decreased.

While West Virginia’s infant mortality rate has been similar throughout the years, it has nearly always been slightly higher than the national rate.

The Mountain State hasn’t seen a steady decline since 1995, when the rate was 7.6 deaths per 1,000 births. A decade later, in 2005, rates had increased to 8.1.

Around that time, in 2005, a young Wyoming County woman and her husband decided to have a baby.

Wendy Pendry, then 19, and her husband, Danny, tried for about a year before seeking help from a doctor in Princeton. About five months after Danny had a minor corrective surgery for a varicose vein, the couple found out Wendy was pregnant.

Like Whitt, Pendry was in good health. She wasn’t overweight. She said she only drank socially, and she quit smoking a year and a half before she got pregnant.

Living in Pineville, she knew she would have to travel outside the county for prenatal care and delivery. She considered moving to Beckley, but she and her husband had made their lives in the rural town.

“That’s something I’ve had to accept. I’ve had to accept that if I need good care, I’ve got to travel.”

And also like Whitt, Pendry wanted care from one doctor, not a team.

“I thought one doctor would be able to stay better informed with my health and remember me from each visit – a more personal relationship where they would know everything.”

She chose an OB/GYN in Princeton, a little more than an hour’s drive from her home. Beckley would have been closer by about 15 minutes, but she would have seen a team of doctors there, rather than one provider.

Her pregnancy was going smoothly, all checkups showing she had a healthy, growing baby boy. Until she reached 22 weeks.

“I said to my husband, ’You know, I haven’t really felt him move around a lot.’ So I didn’t know what to do. We looked online and found sometimes at 22 weeks, that’s normal.”

Her worries continued into the night. She still hadn’t felt her baby move. Her husband drove her to the ER at Princeton Community Hospital around 2 a.m.

When they arrived, a nurse used a doppler heart monitor. They couldn’t find a heartbeat. An ultrasound technician confirmed the same.

The doctor arrived the next morning around 8 a.m. They discussed her options – natural birth or C-section. They decided on natural birth.

“It was painful,” Pendry recalled. “Not only physically, but mentally draining. I had him that night. I didn’t want any drugs. I said you’re not drugging me because I want to be completely aware. I don’t want anything to hinder me seeing him. I want to remember everything about him.”

When Jackson was born, Aug. 8, 2006, the umbilical cord was wrapped around his arm and his leg. Pendry’s doctor told her the cord had cut off his blood supply, and he had likely passed away within the past 24 hours. He was 10 and three-quarter inches long and he weighed 14.4 ounces – normal measurements for that stage in pregnancy.

Pendry knew she wanted to try to have another baby. Because Jackson’s death was due to a cord accident, she didn’t think of going anywhere else for care.

“(My doctor) told me it was never going to happen again,” Pendry said. “I wasn’t going to have any other problems.”

Her next pregnancy ended in an early miscarriage at five weeks. Her doctor encouraged her to try again. Two months later, in February 2007, she was pregnant.

She went to all her regularly scheduled prenatal visits. Everything was going well.

When she was 22 weeks pregnant, she and her family went on vacation in Nags Head, N.C. At a doctor’s visit the day before, the baby was fine.

On their way home a week later, as they were stopping for gas in Nash County, N.C., Pendry wanted to check the baby’s heartbeat with a rented doppler device.

“It was low. Really, really low, so of course, I start freaking out.”

They drove to the nearest hospital. By the time she reached the hospital obstetrician, they couldn’t find a heartbeat.

The North Carolina doctors reached out to her regular obstetrician in Princeton. They scheduled her for an induction at 8 a.m. the next morning.

She gave birth to her second son, Mason, July 1, 2007. He was 11.5 inches. He weighed 1 pound, 1 ounce. Like his brother before him, he was stillborn.

According to America’s Health Rankings from 2016, West Virginia has some of the poorest health rankings for infants.

With 50th being worst, West Virginia ranks 38th for neonatal (0-27 days old) mortality, 44th in infant (under 1 year old) mortality, 44th in low birthweight and 44th for pre-term births.

Whitt, although she and her husband hadn’t initially planned on having a family, wanted to try again after experiencing the loss of their first daughter.

She had no issues conceiving a second time. At Cabell-Huntington Hospital, her doctor prescribed blood thinners, folic acid and baby aspirin to prevent pre-eclampsia.

She also tried a somewhat experimental drug recommended by her doctor called Pravastatin, which she believes further reduced her risk of pre-eclampsia.

After a few minor hiccups, Whitt gave birth at 37 weeks to a small, but healthy baby girl, Alexandra Mireille, on Oct. 23, 2015, at 9:30 p.m. She weighed 4 pounds and 9 ounces, and was 18 and one-quarter inches long.

“She’s our last,” Whitt said. “We’re not trying again.”

Pendry, too, was determined to try again. She had wanted a big family. She had dreamed of having four children, four years apart.

After losing Jackson and Mason, Pendry said her doctor told her she had three options: not having children, adopting or genetics testing. She opted for the latter.

She took all her charts, including pathology reports on her sons’ placentas, to two genetics specialists – one in Virginia and one in North Carolina. After reviewing the reports, the specialists said there were blood clots on the placentas which prevented her boys from getting the blood, oxygen and nutrients needed for survival.

“The guilt I felt,” Pendry said through tears. “I thought, ‘How could I do that? How could my body do that?’ “

But the genetics specialists told her the solution was simple. All she needed was a blood thinner.

For her next pregnancy, she went to see a high-risk doctor at Thomas Memorial in Charleston, a nearly two-hour drive from Pineville.

Her doctor prescribed blood thinners and a daily aspirin. All her prenatal appointments went well, but as she got closer to delivery, at nearly 37 weeks, they found the umbilical cord was wrapped around her son’s neck.

An emergency C-section was necessary, but they saved her baby. She welcomed her 6 pound, 12 ounce baby, Brendan, into the world June 23, 2009.

While Whitt doesn’t know if it could have saved Lillian, she said she wishes her practitioner had taken her concerns more seriously.

She oftentimes wonders if her pre-eclampsia had been caught sooner, if her little girl could have lived, even just a few weeks longer.

“If you feel like something’s off, speak up,” Whitt advises moms. “Even if somebody is being dismissive, keep speaking up.”

For women in rural areas, Pendry said it’s especially difficult: “Just because of where we live shouldn’t mean we have access to less quality care.”

Pendry doesn’t think the death of her first son, Jackson, could have been prevented. But Mason, she believes, could have been spared.

“If they would have reviewed the placenta, if they’d have thought more. I felt if they’d have looked more into it. Knowing what I know now from all the other doctors, I really do believe it could have been prevented.”

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