West Bloomfield resident starts nonprofit after her son was born with a rare brain disorder

By: Mark Vest | West Bloomfield Beacon | Published April 20, 2021

 Hope for HIE Vice President of Marketing Annie Goeller is pictured with her daughter, Emma, who was diagnosed with hypoxic ischemic encephalopathy after her birth in 2011. HIE is a type of brain dysfunction that babies can suffer during the childbirth process.

Hope for HIE Vice President of Marketing Annie Goeller is pictured with her daughter, Emma, who was diagnosed with hypoxic ischemic encephalopathy after her birth in 2011. HIE is a type of brain dysfunction that babies can suffer during the childbirth process.

Photo provided by Annie Goeller

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WEST BLOOMFIELD — Over the course of history, many good causes have been started as a response to difficult circumstances.

In 2012, West Bloomfield resident Betsy Pilon’s son, Max, was diagnosed with hypoxic ischemic encephalopathy after she gave birth to him at Henry Ford West Bloomfield Hospital.

HIE is a type of brain dysfunction that occurs when the brain doesn’t receive enough oxygen or blood flow for a period of time; hypoxic means not enough oxygen, ischemic means not enough blood flow, and encephalopathy means brain disorder.

Betsy said Max was born at 37 weeks, after he stopped moving.

Following his birth, she launched a nonprofit called Hope for HIE, which, according to its website, is the “worldwide voice” of families who have children with hypoxic ischemic encephalopathy.

HIE occurs during childbirth when a baby’s brain is deprived of blood and oxygen, causing cells in the brain to die within minutes.

The oxygen deprivation that causes HIE can stem from obstetric complications during the labor and delivery process, as well as prenatal complications or events.

Labor and delivery complications can include placental abruption, excessively low maternal blood pressure, umbilical cord complications and uterine rupture.

Neonatal complications can stem from maternal infections, placenta blood circulation issues, preeclampsia and stroke.

According to Betsy, who grew up in Troy, HIE occurs in about two or three of every thousand live births.

“So, it’s rare, but it’s not rare if you think about that,” she said. “If you do the calculations of births per year, it’s literally thousands upon thousands of families that are impacted by this.”

According to the Birth Injury Help Center, HIE is one of the leading causes of infant mortality in the United States every year, with 15%-20% of newborns diagnosed with it dying in the first week.

From the remainder, 25% will have permanent brain damage, with various degrees of severity.

Brain injuries from HIE can result in physical disabilities and cognitive impairment.

The primary treatment for HIE is body and head cooling, which is referred to as therapeutic hypothermia.

The aim is to bring the baby’s body temperature below normal immediately after birth, which can slow down the cellular decay and damage process within the brain.

Despite HIE being a permanent injury, therapeutic hypothermia can minimize the long-term impact.

The treatment was used for Max.

“Basically, he was cooled for 72 hours to 91 degrees,” Betsy said. “They brought down his body temperature.”

Betsy, who is married and also has a 5-year-old daughter, Emily, discussed Max’s condition.

“He does have some disabilities, but he’s a happy third-grader who’s in a general education classroom with some support,” she said. “He has mild cerebral palsy and things like that, but we say he lives his best life.”

She said Max has braces on his legs called orthotics and has vision impairment.

Cerebral palsy, epilepsy, learning disabilities and attention deficit hyperactivity disorder are some of the diagnoses that can result from HIE, along with other developmental challenges.

Betsy said HIE is the No. 1 cause of neonatal seizures.

“That’s a big burden and very scary for the families that go through it,” she said. “And then later on down the road, HIE can manifest in learning and attention disabilities or differences, hearing and vision loss, (and) any way that a brain can be impacted as a system. … There’s a full spectrum of outcomes, from very mildly impacted to a loss of life.”

A large segment of the population is not familiar with HIE. Betsy said there were “no mass communication awareness efforts” until Hope for HIE was started.

The nonprofit designated April as HIE Awareness Month in 2016.

Betsy said Hope for HIE has grown.

“We’ve developed resources to educate families and the things that they need to look out for after they get discharged, because in my case and many others around the same time that were facing this diagnosis, there (weren’t) educational resources,” she said. “So we’ve built that out of scratch, starting in 2013.”

From her perspective, Hope for HIE has made a difference in the lives of families since it began.

“We have families joining us who have gotten diagnosed, and their child is like, two days old,” she said. “Before it was anywhere from like two months post discharge to two years down the road. … And so, we’ve been able to decrease that time from diagnosis to getting peer-to-peer support. The research behind peer-to-peer support is that it truly makes a difference to empower families to have the best outcomes for their kids.”

In the absence of a community of support and educational information about their child’s diagnosis, Betsy said, families’ mental health can be impacted.

She also shared another important benefit Hope for HIE can provide.

“We’re partnering with the top clinicians and researchers in HIE,” Betsy said. “We launched last year an educational series with our medical advisory board, and that has been a game changer. Our families are getting the information that they need to best advocate for their child’s care, and we have seen a transformational difference (in) the work that we’re doing.”

Indianapolis resident Annie Goeller serves in a volunteer role as the vice president of marketing for HIE.

She learned of the nonprofit after her daughter, Emma, was diagnosed with HIE after her birth in 2011.

“In the last several years that I have been on the board, we have seen a huge increase in awareness and seen our community grow with both parents and medical professionals,” Goeller wrote via email. “More people are learning about HIE, and more families are finding us early in their journey for support.”

Goeller shared her thoughts about how gratifying it is to be part of Hope for HIE.

“To know that I am helping families who are in the same position I was 10 years ago — scared and feeling alone — is so fulfilling,” she stated. “It makes me so proud of the work our organization has been able to do.”

Betsy discussed an aspiration she has for the cause she has embarked upon.

“The continued improvement in care,” she said. “Where we can look at partnering for new research and things like that, that are dedicated to either decreasing the incidence of HIE or improving the quality of life for children and families.”

When it comes to HIE, Betsy said some of the causes are preventable and some are not.

However, one thing she is an advocate of is pregnant women counting the kicks of their babies.

Countthekicks.org is a website that expectant parents can use as a resource.

According to the site, Count the Kicks was created based on public health research in Norway “that demonstrated a 30% reduction in stillbirth by teaching pregnant women how to monitor fetal movement during the third trimester of pregnancy by doing kick counts on a daily basis.”

The site added that, “Years of industry research combined with expert analysis proves the importance of kick counting in reducing preventable stillbirths.”

Betsy was aware of kick counting when she was pregnant with Max.

“I knew about kick counts,” she said. “That was my trigger to go into the hospital. Had I not done that, he would (have) died; he would (have) been stillborn. I think kick counts can save lives and do.”

Despite parenthood being a life-changer in and of itself, for Betsy, it has changed her life in ways not everyone can relate to.

“Going through what we’ve been through with Max, it has been a paradigm shift in my life and how I approach life,” she said. “I traditionally was a big planner, and it’s, I think, shifted my perspective into soaking up every moment and every milestone, because life is precious. We almost didn’t have these moments with him, and I still appreciate that almost nine years later. And regardless of any differences or disabilities, kids have a mass value just for being themselves.”

Betsy said having cerebral palsy is part of Max’s story, and that he’s “very aware.”

“He understands he can’t run as fast as other kids, he wears braces and has glasses,” she said. “Turning it into him living his best life and helping him with self-advocacy has been really, really important for him and for us as parents, especially as he entered into school and wants to do the things that other kids do. He wants to be on the baseball team, loves basketball and things like that.”

For more information, visit hopeforhie.org or call (248) 574-8099.

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