I remember getting a large stack of papers inside an unmarked, manila envelope…like a sad gift someone forgot to wrap. After the verbal explanation of HIE began emitting from the team of doctors we were surrounded by in that small, NICU room, the envelope with her formal diagnosis was laid in my lap. Words like brain damage, global and severe were used as they described what they confirmed had just happened to Hudsyn. Dan and I began to quietly sob. This room, this moment…it was our secondary trauma to the horrific birth that had happened the week before.
“We hope she wakes up, but we can’t count on it,” the doctors said as they continued to try to explain to us what this small, yet powerful acronym meant for our new baby. Inside the envelope were copies of her MRI, EEG’s and a sheet of paper, outlining in medical jargon what each “grade” of hypoxic ischemic encephalopathy meant. They had told us she was somewhere between Grade II-III HIE.
We know what it feels like to be facing a new diagnosis: When doctors and nurses feel so bad for you they can’t find the words to truly explain what is happening to your baby in a way that you understand. That, and mainly your brain simply refuses to take in the plethora of medical terminology you’ve never heard before. During those first few days, my brain actually started to eliminate all information that wasn’t necessary to function. The outside world went dark. I remember how awful it felt to look at Hudsyn, and wonder what’s wrong…and worse, what’s going to happen to her future? Will she recover from her HIE? Is that possible when you have a severe outcome? What will she be like to take care of at home? Will we be able to take her home?
While waiting for your child to reach that “next step,” you search online. You look every day for examples of hope, recovery and miracles. You find things like this.
You read more medical terminology, hoping to find a glimpse of the future for your baby. I wanted to know, to see, to read about what Hudsyn would be like when she was a teenager. I would read medical journals & studies, like this one.
The different rabbit holes of keywords I searched for online kept resulting in stress-inducing photos of infants in incubators, lying flat with their identity bracelets hanging off their skinny legs. As a brand-new parent, reading and finding these results made my heart drop. As in, it dropped out of my chest and onto the floor in front of me.
I would keep reading anyway, because it’s the only resource I had at that time. That awful, manila packet the doctors so gently placed on my lap gave very little…so I kept searching. If you’re lucky, you might have a medical professional in your family. I did…and although my mom is an extremely knowledgeable family nurse practitioner, she had no idea how our journey would turn out. No one did. We became even more scared, and worst of all, we began to feel hopeless.
While searching, you also find support groups or other parents on Facebook who have similar outcomes. At first you feel a sense of relief…we’re not alone! Those new people you meet quickly become best friends and confidantes. You may find a blog or two, that gives you hope because that baby’s outcome is what you hope for your new baby. In the end, though, you don’t really know what will happen with your child…there is no crystal ball.
But there is always hope…even if small at first.
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 began to face the reality of her possible outcome.
Grade II-III HIE isn’t great when you look only at the long list of risk factors. But I had to – I had to know what we were “in” for when…IF we were able to take Hudsyn home.
Hudsyn’s original list of diagnoses isn’t the longest list I’ve seen, but at the time, it crushed us. It was overwhelming, and to most people outside of our world, looked as if she’d die tomorrow. We don’t talk about it much, but it’s important you understand…especially if you’re a new HIE parent reading this, the list of outcomes has nothing to do with who your child is and their own, unique personality that you will learn to love and appreciate over time.
It took a long time, but eventually…we learned to think about this “list” in a different way. We know that God doesn’t create anything less than whole, and so we don’t believe she is any one of these labels. We see her each day as perfect and amazing. I also believe that because we approach her care this way, she has a higher quality of life and is generally happier. Our attitude and energy is directly connected to how she reacts to each situation…so we attempt always to keep things positive and bright, especially when talking about her care in front of her.
Hudsyn’s Official List of Diagnoses
Hudsyn has perinatal HIE, Grade II-III. Over the course of a few years, following her birth, our little girl became diagnosed with the following:
Spastic Quadriplegic Cerebral Palsy – Mixed tone-spastic extensor tone and dystonia in the extremities and hypotonia throughout the trunk and pelvis.
Global Developmental Delay – including impaired mobility. Hudsyn cannot walk (nor likely will in the future). She has to be carried or lifted everywhere we go. She doesn’t speak, although, she does make vocal sounds.
Structural Focal Epilepsy – She presented with seizures a few hours after she was born and although we had them under control when she was discharged from the NICU, they started up again when she was three months old. We had one year of full seizure control, but have not been able to gain that back since that year. Because of her seizures, she’s on the Ketogenic Diet. We received 40-50% seizure control from this within the first year. Her seizure medication has included Phenobarbital, Zonegran, Clonazepam, Topamax, Onfi and Keppra (none of which worked to control her original 40-50 seizures per day). She is only on Topamax right now. After stem cells, a few alternative therapies, and (since Dec. 2018), her VNS device, the other pharmaceuticals were just too costly to her to use with their yucky side effects.
Cortical Visual Impairment (CVI) – Hudsyn can see, but how her brain is “seeing” things and how her eyes are truly taking in information are two completely different things. CVI is measured on a wide range and can improve with therapy, but is rarely ever “fixed.” With stem cells, her CVI (originally a 1-2 on a scale of 10) is now a 5+. She identifies toys and objects…and can identify people from time to time. In addition, she sees more peripherally than straight on…which is why she moves her head from side to side. She sees better out of the sides of her eyes than out of the front. Her color perception and recognition have also improved with maturity and constant therapy.
Microcephaly – This literally means “small head.” Her head circumference is smaller than normal. It’s usually associated with neurodevelopmental disorders like HIE, along with many others.
Hip Dysplasia – Both of her hip sockets were formed incorrectly (i.e. not at all) because she never walked. As a result, the ball of her leg bone is out of socket permanently, a common problem for kids with Cerebral Palsy. Her legs and hips are tight and difficult to move, which is a problem like when we tried hippotherapy. As time goes on, we will have to manage her pain with this diagnosis and why we see an orthopedic surgeon regularly for follow ups. Right now, we work on weight bearing activities like putting her in a stander; doing PT on all fours; pushing off the side of the pool during swim therapy, etc. This was the toughest diagnosis for me to hear, and it will always be a challenge for Hudsyn.
Gastroesophageal reflux disease (GERD) – We give her 8mls of Omeprazole twice a day to help with her GERD and spontaneous vomiting. This is given through her G-tube.
Gastronomy tube dependent nutrition (G-Tube) – Hudsyn has a plastic tube that is located on the outside of her belly and goes directly into her stomach. It was surgically placed when she was two. We are able to feed her this way and not sacrifice her growth and nutrition each day simply because she’s unable to take the volume she needs by mouth. Because of her brain injury, she’s also at risk for constant aspiration. The G-tube allows us to easily feed and medicate her quickly.
Overall, there’s a lot to unpack and manage with a severe HIE diagnosis. However, Hudsyn didn’t get all of these symptoms at once. Many of them came in the first year and a few in the second year. But we also know that it’s likely not going to be a static list. It will change and possibly grow longer as she ages.
No matter what her diagnoses, Hudsyn is a beautiful soul and we make every effort to describe her as such. We don’t see what’s “wrong” with her…we see our child just like any parent would–with all her quirks, personality, and light. We do this so much that we’ve never really publicized her medical documentation like this. So please see these only for what they are…medical documentation that allow us to provide better care for her on a day-to-day basis.
Her journey, her lessons to us and my general need for planning her future is also why I’ve chosen to do what I do…
