On January 25, 2020 at 6:04 am our sweet daughter Juniper (or Juni) made her entrance into this world. She had the dantiest fingers, big alert eyes, and the squishiest cheeks. Being that it was still two months before COVID shut things down, her two half-brothers were able to come and meet her at the hospital.
Our blended family was complete. Juni was such an alert and active baby. She started smiling at only a few weeks old and giggling a few weeks after that. Her smile took up her entire face and her giggle was a deep laugh that seemed too big and masculine for such a tiny little girl. We call it her “hearty” laugh. At her six month well-child exam, we expressed some concern that she had learned to roll to her belly at only three months old but seemed to sort of “plateau” since then– no grabbing, no desire to sit, and not rolling from belly to back. Her pediatrician assured us not to worry, and since we weren’t first-time parents, we didn’t. Just a few days later we noticed some “odd” movements when Juniper would wake up from a nap. Her arms would jacknife up and out, her head would dip down, and her eyes would deviate.
At first, they happened infrequently. She had horrible reflux so we assumed that’s what it was. However, it wasn’t long before the “events” started happening every sleep/wake cycle and lasting upwards of 10 minutes. It was at that point I caught it on video and we decided to go to the local emergency room. After a few hours and multiple doctors examining her, they discharged us and assured us that while we may want to see a neurologist at some point, there was nothing urgent about her situation. When we returned home, my husband, Derek, started Googling. “Look at this!” he said to me while handing me his phone. In front of me was a video of a baby doing the “odd” movement we had seen Juniper do. Infantile Spasms. Everything we read said it was an emergency and she needed treatment right away.
The next few days were a blur. We drove to the closest children’s hospital and were admitted right away. Juniper was hooked up to an EEG and within moments, she was diagnosed with infantile spasms; a rare and catastrophic form of pediatric epilepsy. Words and phrases like “global development delay”, “disability”, “catastrophic to development” stuck in my mind as I read more about her diagnosis. The treatment required an aggressive round of steroids to try and calm down the chaos on her EEG. I learned how to give my six month old infant injections into her chubby thighs twice a day for a month. My once sweet and smiley baby turned ravenous, extremely angry, and wouldn’t sleep. She went from the 30th percentile in weight to the 90th percentile in only four weeks. But the worst part? The spasms didn’t stop. We added another medication and within 24 hours we watched her spasms fizzle out. Unfortunately, the calm didn’t last. Six weeks later her spasms returned and we had no idea why. There is always a “cause” for epilepsy and specifically infantile spasms.
It typically is either due to a genetic variant, a traumatic brain injury, or a brain malformation. All of Juniper’s tests showed nothing. No answer for why we could not get control of her seizures. And by this point, she was having hundreds of tiny seizures every single day. We watched her smile disappear. Desperate, we went to get a second opinion and do a full surgical work-up 1000 miles away from home. The surgical conference concluded Juniper had something called focal cortical dysplasia. When her brain was developing, neurons “clumped” in certain areas. These “clumps” were dysplasia and it was likely they were causing her seizures. The surgical team recommended a surgery called a TPO resection where they would remove her temporal, parietal, and occipital lobes of her brain. Juniper was given about a 50% chance of seizure freedom through this surgery– odds much greater than any medication at this point. While we knew this would cause permanent disabilities, the risk of ongoing seizures was much worse. For over two months, Juniper had seizure freedom. Her personality blossomed and her development took off. It was like our daughter was coming out of a fog. Her smile again took over her entire face and her giggles came back.
Unfortunately, on January 18, 2021 (my birthday), the spasms returned. We took the 1000 mile trip once again. This time, only one parent could be in the hospital at a time due to COVID restrictions. She celebrated her first birthday hooked up to an EEG. During that time, Juniper underwent a second surgical evaluation and was deemed a candidate for a hemispherectomy. In this procedure, the frontal lobe would be removed including her motor-strip. Removing the motor-strip would mean Juniper would be essentially paralyzed on the left-side of her body. However, the surgery is recommended to be done when a child is young due to neuroplasticity. In many cases, children gain back the use of their leg and their arm becomes a “helper-hand”. Since her biopsy had confirmed focal cortical dysplasia the first time around and we had seen such great success, we agreed to the surgery. Juniper was given an 80% chance of seizure freedom. It was the first time during this entire journey I felt certain we would “beat” epilepsy. Her seizures returned three weeks later and we have not gained control since. No medical team is quite sure why.
For the past year, we have watched our daughter have seizures 5-8 times a day with some clusters lasting close to 30 minutes. The feeling of watching your child seize and being able to do nothing to help them is the worst feeling any parent could experience. There have been days I am unable to get out of bed and days when I can’t stop crying. The fear and uncertainty over her future and the future for our family can at times feel unbearable. At any moment, a bigger seizure could occur which could leave us calling 9-1-1. Much to the surprise of her medical team, Juniper is making slow but forward developmental progress. However, that is partially due to the hours and hours of physical, occupational, and speech therapy we take Juniper to and what we do at home.
While we are fortunate to have good jobs and good insurance, having a child with extensive medical needs is incredibly financially draining. Many of her therapies are only partially covered by insurance with some not covered at all. Additionally, Juniper is getting bigger and heavier and will need medical equipment in the future that comes with a cost.
When we purchased our home, Juniper had not yet been diagnosed. We live in a two-story home and her therapy room is on the second floor. This means we will either need to adapt our house to accommodate Juniper as she gets bigger or we will need to move into a home that works better for our family.
Additionally, I worry about her two brothers. They have seen more than they should at such young ages. While we try to give them as much attention as possible and make their lives as “normal” as possible, there have been moments where the priority needs to be Juniper and where trips have needed to be canceled because we don’t know how to bring Juniper along with her medical needs.
We are a family that loves the outdoors, but equipment that makes it easier for us to continue experiencing this as a family of five is incredibly expensive. But the reason I get out of bed and the reason I keep going is for Juniper. Through two brain surgeries, numerous medications with horrible side effects, a VNS implant surgery, and more pokes and blood draws than I can count, Juniper manages to keep her smile. Her joy is contagious. This is what we hang on to as a family. Finding joy wherever we can. And Juni finds joy in so many places.
Juniper loves being outside– a true Oregonian like her parents. She loves stroller rides, playing on the swings, and going on hikes. She loves sparkles, beads, and tutus. She loves animals, especially her cat, Nelson and any dog that will let her grab on to them (we are working on “soft touches”). She is obsessed with her animal sound book and will want to read it over and over and over. She absolutely adores her brothers and laughs the loudest when they are being silly. While she cannot crawl or walk, Juniper has figured out how to scoot all over the house. She likes getting into boxes and baskets and taking everything out. She has a phenomenal appetite and likes all food, especially cheese. While she’s nonverbal, she has the loudest squeal and the biggest laugh. I believe her brother, Nolan (6) put it best when he said: “Juni does talk. She talks through her smiles.” And if Juniper can smile, so can we.