We learned very quickly after Hudsyn’s diagnosis that there wasn’t much useful information on the internet about HIE (Hypoxic Ischemic Encephalopathy). What was out there scared the crap out of Dan and I…and really didn’t offer a lot of helpful information.
The doctors who gave us the diagnosis certainly weren’t helpful. I remember getting a packet of information inside a bland, manilla envelope…like a sad gift someone forgot to wrap. After the verbal explanation began, it was laid in my lap as we began to cry. Brain damage. Global. Severe. We hope she wakes up, but we can’t count on it. They continued to try to explain to me what this small, yet powerful acronym meant for our new baby. Inside the envelope were copies of her MRI, EEG’s and a one-sided sheet of paper outlining in medical jargon what each “grade” of HIE meant. They had told me she was somewhere between a Grade II-III.
I know what it feels like to be facing a diagnosis that you haven’t heard of before. When doctors and nurses feel so bad for you they can’t find the words to really explain what is happening in a way that you understand. Your brain begins to shut down anything that isn’t necessary. The outside world goes dark. I know how awful it feels to look at your baby and wonder what’s wrong…and worse, what’s going to happen next? The first year after receiving this diagnosis feels a lot like this.
While waiting for your child to reach that “next step,” you Google. You Google every day. You find things like this.
You look at these stress-inducing photos of infants in incubators laying flat on their stomachs and hospital bracelets hanging off their skinny legs, and as BRAND NEW PARENT reading the short, but concise medical terminology about your baby’s diagnosis, your heart drops. As in, it drops out of your chest and onto the floor in front of you. You keep reading anyway, because it’s the only resource you have. That tiny manilla packet the doctors so gently placed on your lap gives you very little…so you keep Googling. If you’re lucky, you might have a medical professional in your family. I did…and although she’s extremely knowledgeable, she had no idea how our journey would turn out.
You get even more scared, and worst of all, you begin to feel hopeless.
The long list of possible risk factors is daunting. And yes, they even go into how to prevent it! (at that time, you’re thinking – Oh that’s comforting…the only reason I searched this acronym is because it’s AFTER the incident).
Then you find gems like this one.
Remember, most parents searching for this particular phrase, “What is HIE?” are NEW parents and have no idea what’s in store for them. As if we’re all doctors and this diagnosis is so simple to “fix” and treat. By the way, the treatment list here doesn’t include stem cells, diet improvement or alternative therapies. Granted, they also don’t talk too much about outcome or that your child may be one of the many that never recovers from their injury. (Yeah, there’s that, too.)
Then you find support groups…like Hope for HIE or other parents on Facebook who have similar outcomes. At first you feel a sense of relief…we’re not alone! And those support groups start to gain momentum and become filled with new members. Other parents and caregivers you wished you didn’t have to meet because it meant our little “club” was growing. But members who quickly became best friends and confidantes. You find a blog that gives you hope because of the outcome – like Sophie‘s story.
But then you think – sheesh, it took awhile for me to find this group. I wish it wasn’t so hard for us all to communicate and gather. It didn’t eliminate the original frustration. The challenge of not being able to find the information we needed at the moment we needed it. I developed a deep need to change this. I needed to change what Google was giving parents like us. I wanted medical professionals to understand the words they were choosing and how that affected a new parent. And I wanted this amazing group of parents to be able to help more new families. I had to do something.
And I wasn’t alone. It turns out, there were thousands of other parents who felt the exact same longing. One of the main and original collaborators was in fact Claire Greer, Sophie’s mum. So, over the last year, I’ve become heavily involved in creating an international non-profit called Hope for HIE alongside a team of four other VERY hard-working board members, their families, and a slew of international volunteers. We began the difficult challenge of getting this little idea off the ground simply because we were disappointed and truly hurt by the lack of information out there for our families. We’ve started to re-define what it means to be on this journey…
I’m so proud and excited for how far our group has come. However, it is the only club I wished would shrink and stop getting new members. 😉
After surviving the first year of HIE, you begin to gain some confidence in how to manage your child’s immense healthcare needs. You get good…REALLY good at all the terminology, acronyms and common phrases nurses & doctors use to describe your kid. You gain confidence. After all of that, you begin to accept….and eventually you begin to advocate. You find new treatment routes; you find new therapy modalities, new comrades and warrior parents that stand closely by your side….and most importantly, you find hope again.
We’re now almost five years into Miss H’s journey with HIE. And this is what HIE means to us now…