I am always so excited when I receive messages like this one. I love to connect with other parents of children with special needs. I realize the importance of having a reliable support system, even if it is just one person to talk to who can understand what you are going through. We all need support and guidance on our journey, and I am honoured to be able to help in any way I can. Lucy-Anne, thank you for reaching out, and thank you for sharing your daughter's story.
Hannah is the middle child of three girls. My first pregnancy was very normal, including six months of all-day nausea. My daughter, Lily arrived via standard vaginal delivery, no epidurals, surprisingly average. We decided that we would like to have our children close in age, and wasted little time trying to get pregnant again. Our second child was born just two weeks shy of Lily's 2nd birthday. My pregnancy was again very normal, and delivery was easier than the first, with no complications. We were blessed with two beautiful and healthy little girls, and life was moving along as planned.
Hannah was about 3 or 4 months old when I started wondering why she wasn't reaching the normal milestones, but having a toddler in the house meant we were always busy and truly I wasn't worried. Hannah was a very happy baby even though we did have difficulties getting her to sleep and keeping her asleep. She had an older sister who kept her entertained and I tried not to compare their abilities.
At about 5 months, I expressed my mild concern to my GP about Hannah's development, and he referred me to a pediatrician just to ease my mind. Of course I was reassured by my husband and friends that everything was fine. We were living in Twillingate at the time. I was a teacher on maternity leave, while my husband worked away as a driller, and we both owned and operated a seasonal coffee shop in the area. Two weeks prior to our appointment with the pediatrician in St.John's, Hannah exhibited a behaviour that I had never experienced with any child, mine or otherwise. She was sitting in my lap while I was on the computer, and I had one arm under her armpits. She started to repeatedly slump in my arms, and then regain her muscle tone. I had no idea what was going on, but I knew something was very wrong. Like most worried parents, I immediately went to Google and typed in a description of what I was experiencing. I saw the words infantile spasms, seizures, epilepsy, brain development, and many other medical terms that I had never before concerned myself with. I immediately called my husband and began sobbing on the phone in panic mode, saying that we needed to get Hannah to the hospital right away.
The local hospital was more of a clinic than anything else. Most procedures required a trip to Gander, including having babies, but off I went to see the doctor on duty. He told me that I was overreacting and "worrying too much like many mothers do". I was extremely dissatisfied with the response and treatment. Hannah even had another spasm in my arms while the attending nurse watched. I decided to try to calm down and give it some time. For the next 24 hours I recorded every strange movement Hannah made, and the next day I eagerly called the Janeway emergency room. After having a phone consultation with a nurse, she said, "If you are concerned you need to come here right away." I then proceeded to call the office of the pediatrician that we were seeing in two weeks time. The very kind nurse assistant listened to my story, consulted with the doctor, called me back within a half hour and said to come in for a ten o'clock appointment the next morning.
It was about noon, in the middle of the day and I started immediately packing up my car with a medium sized black lab, my two year old, and my 6 month old. We had our entire house in boxes because we were supposed to be moving to a new house in a few days and my husband had to stay behind to deal with the chaos.
The next day everything seemed to happen at lightening speed, or at least that's how I remember it. We saw the pediatrician at 10:00 am, he called the neurologist at 10:15, we saw the neurologist at about 11:30, and by 1:00 we were admitted to the Janeway. Hannah was immediately started on anti-seizure meds to stop the infantile spasms, which had been confirmed by the neurologist. We were told that over the next few days we would have several diagnostic procedures done to attempt to determine the cause of these seizures. Meanwhile, a lawyer had to meet us in the Janeway lobby to sign the last documents for our new house, and my husband was scrambling to get a ride into St. John's as fast as he could.
On day two, Hannah had an EEG, an MRI, and a CT scan. My husband was by my side when the neurologist told us her diagnosis and ultimate cause of the seizures. Our little baby girl had an extremely rare brain malformation called Subcortical Band Heterotopia. Basically, the grey matter in her brain is accumulated in a band in the centre of her brain, and is diffuse throughout her brain. I like to describe it as a "cloudy brain". We were told that this condition often results in developmental delays in all areas, that she may not walk, and that she may not even be able to talk. The doctor said that because the condition is so rare there is a wide range of delays and it would be very hard to predict Hannah's rate of development.
It was like the Earth had been pulled out from under us. In that moment I knew our lives would never be what we had planned or predicted. I also knew that I would learn everything there was to learn and I would do everything there was to do to help my daughter grow and thrive. She was immediately put on valproic acid to treat the seizures, and they reduced significantly. In later months there were many days without any spasms. She continued to be a happy baby, but failed to meet many of her milestones. We proceeded with genetic testing to determine that neither one of us were carriers of the genetic spelling error that caused Hannah's condition. She was a rare gift, and strike of lightning.
Fast forward 8 years, and Hannah continues to struggle with seizures and has significant delays in all areas. However, she is walking, talking, and laughing every day. Some days are harder than others. We have to survive the days with repeated outbursts, screaming and temper tantrums, to get to the days were she laughs and hugs her sisters all day. We moved back to St. John's shortly after her diagnosis to be able to provide Hannah with as much therapy as we could in her early years. It definitely has had an impact.
Hannah has been on many different anti-seizure meds, but as she has gotten older the seizures have become more intense and harder to manage. We very recently started the ketogenic diet to treat her now intractable epilepsy. So far, we have seen a dramatic decrease in the number and intensity of the seizures, but it varies daily. We have high hopes that this intensely monitored diet will help Hannah to move through her day without being a safety concern.
Hannah has been on the diet now for 3 weeks, and we hope to get her back to a full day of school very soon. It is challenging to make the food portable because it requires measuring every ounce of food, while restricting the types of food shes able to have. Like most kids, Hannah has particular tastes and textures that she enjoys, adding more limits to the types of food she can consume.
As a family of 5, Hannah now has a 2 year old sister. We are very grateful for what we have and especially for how well Hannah as progressed. Hannah has taught us how to focus on the important things in life. We have learned to take one day at a time, and to accept that life doesn't always turn out as planned.
Thank you again, Lucy-Anne. I am so glad that you felt comfortable sharing Hannah's story. I know first hand that your child's diagnosis can be a difficult thing to come to terms with, but once you begin to accept it, the weight begins to lift. You said to me, "It's funny how after 8 years I finally feel like I'm accepting that I am not like 'regular moms'. I guess I didn't want to make others feel bad for me, or always be the 'downer'." Listen. We all have days of being the downer, and dammit.. we deserve those days! Our lives are challenging, there is no question about it. I just hope that in reading my blog, and the stories of other parents, you realize that you are not alone. We've got your back.
I look forward to catching up with you over coffee (or in my case, tea!).
If you would like to be featured on Tulip Tales, please email me at: firstname.lastname@example.org Please include a brief description of your child and their condition, along with any pictures you would like to share. I will contact you with specific questions.