Back in March 2012, I was eagerly, and nervously, anticipating the May arrival of my and my husband’s first child. We went through a very uneventful pregnancy, until the night of April 22nd at 37 weeks pregnant. I noticed my belly seemed “floppy,” and I did some kick counts, having just learned about them the week prior.
There were no counts to kick.
We called into Labor & Delivery, and were told to come in. We joked about being the couple that would get checked and head home. Instead they found a heart rate, but with no variability, and a failed biophysical profile. Our baby was in distress and needed to come out, and quickly.
Max was born at 1:01 a.m. on April 23rd, 2012.
He let out a weak cry before he was rushed to be intubated and assessed. An hour after that assessment, as I was in recovery, we were told he needed to be transferred to the higher level NICU for something called “cooling.”
Having worked for the health system I delivered into, and ironically, written a NICU transfer outreach brochure a couple of years prior, I felt very comfortable knowing what team was coming to get our baby, and figured it had to do more with being “early” and needing breathing support. We didn’t realize it was something neurological, and Max was actively crashing.
Those first few hours after Max got transferred, with my husband following closely behind the ambulance rushing downtown, and my own ambulance to follow without the same urgency, we honestly didn’t know much except that there was significant worry.
Like flights that I fear, it was a bumpy landing into cooling, with maxed out oscillator settings and many interventions to save him.
Once in cooling, he stabilized–sedated on phenobarbital to suppress any seizure activity he may have, and morphine to keep him still and comfortable. We were told to keep stimulus low, that touching him could exacerbate pain, and to watch and wait and see how he would do with this cooling therapy. There was no ability to feed him. At that time, cooling was moving from “we think this works” to “standard of care.” Occasionally, we’d give his soft skin a brush and see him grimace. It was heartbreaking.
He did well in cooling, and was able to be extubated on the final day. MRI day was devastating, post-cooling EEG was encouraging. We were able to finally hold him after his MRI on day five. Watch and wait, wait and see.
The care we received was very good. We had very dedicated and kind nurses, an exceptional neonatologist, and the occasional therapist over the next couple of weeks. Feeds were slowly introduced, building stamina. We were able to integrate as much as we could into his care routines.
The NICU environment was very stressful, and we felt like a fish out of water the entire time.
We learned that Max was in the “most critical pod,” was the biggest baby in the NICU by far at a whopping six pounds 11 ounces, yet we were surrounded by micropreemies, NAS babies, babies whose young parents didn’t have resources to visit every day, and the “grower and feeder” preemie families. No families really talked to one another.
We were never given the diagnosis of Hypoxic Ischemic Encephalopathy, just overheard the “encephalopathy” part one day during rounds of one of the neonatologists who didn’t seem to prefer family-centered rounds, and asking what he meant seemed like I was interrupting his whole day.
“It has to do with the brain. It’s what happened to your baby. Just don’t go home and Google it,” he said. Noted. When you get home, go straight to Google.
At discharge, we were mandated to take an infant CPR class before we could go home, received instructions on enrollment to early intervention, and a brochure stating we were “invited” to join the Medicaid supplemental program.
When asked if we had any questions, we asked if they could connect us to support groups for this. We asked if they knew other families who have been through this that they could connect us to, but were told they didn’t know of any. We got home. I googled.
I found Hope for HIE.
It was a small Facebook group at the time connecting around 200-300 families, worldwide. They all had the same stories of isolation and confusion. According to the National Library of Medicine, Hypoxic Ischemic Encephalopathy (HIE) happens in 1-3 per 1,000 live births in developed countries and up to 20 per 1,000 live births in low- and middle- income countries. According to the World Health Organization, not being able to establish breathing at birth is one of the largest causes of early neonatal mortality, and only a handful of people were finding the support they needed.
HIE can lead to epilepsy, cerebral palsy, and learning and attention differences and disabilities, from very minimally impacted to loss of life. There are also many, many causes with the vast majority not being preventable. And, very few people know about it.
This was a call to action.
In 2013, with the blessing of the founders of the group, several of us got together to look at how we could change the landscape of support and advocacy for neonatal and pediatric-acquired Hypoxic Ischemic Encephalopathy. We started a nonprofit organization, and planted the foundational flag in all places, in West Bloomfield, Michigan.
The first five years, this grassroots group had small initial goals–create a more welcoming place on the internet to connect families, and reach out to NICUs and ask them to refer families to peer support. In April 2016, we launched the first ever global Hypoxic Ischemic Encephalopathy Awareness Month. In 2019, we had grown from a few hundred families to nearly 5,000. And, today we’re working to accelerate research and provide comprehensive support services to impacted families.
For my family, the support, camaraderie, and connection we’ve found with families going through the same diagnosis, even with a wide spectrum of outcomes, has given me the confidence, connection to resources, and peer support to tackle the challenges that have come with this diagnosis in ways I wouldn’t have otherwise.
The power of community in life with medical challenges is essential for parents to connect into. I cannot imagine my life without these other families–they are truly my lifeline.
The future is bright for HIE families. There are new therapeutics on the horizon. There is more awareness and support for the needs of families facing this diagnosis than ever before. And like other medical-based communities, we are stronger together.
–Guest submission from Betsy Pilon