“Grayson was born at term on March 18, 2019. Labor was very quick and very intense! Several minutes before he was born, the nurses were having a hard time finding his heart rate on the monitors, and they were worried if we let it go on much longer, he would have some serious complications. The doctor used vacuum suction to help deliver him quickly, so poor little Grayson was born looking like he’d been in a boxing match. His face was bruised and one of his eyes was so swollen, he couldn’t even open it all the way.
Because they used a vacuum and he was so bruised, they monitored him closely to make sure that there wasn’t any internal bleeding. One of the first things my husband and I noticed about him was he had a ridge across the top of his head. No one seemed very concerned about it, and we thought if it was something to worry about, the doctor would have said something or they would have noticed it on the 20-week ultrasound. We thought it probably had to do with the quick labor and delivery, and his head was just a little misshapen from the vacuum.
At his 2 week check-up, I brought up my concerns to his doctor. I asked if it was something I should be worried about, or if it was something to just keep an eye on. He mentioned the possibility of craniosynostosis (when the sutures in the head start to fuse prematurely) and brought up microcephaly for the first time. Up until that point, I really had only heard of microcephaly in relation to the Zika virus. However, that’s just one of the possible causes of microcephaly, and it’s not even the top cause. Grayson’s head circumference was measuring below the 1st percentile, so we were sent for a CT scan to see if they could find out what was going on.
The CT showed no evidence of craniosynostosis, which was a relief since that would have meant major surgery. However, there were some concerns with his brain. We were told it is much smaller than they would expect for a baby his age. In fact, they told us, ‘It looks more like the brain of a preemie.’ The term ‘microcephaly’ just means small head, but usually, the person affected also has a small brain. In some cases, there are underdeveloped, calcified, or missing parts of the brain in addition to the microcephaly. Grayson was lucky to have none of these. His brain is structurally all there, just small.
They also noted a simplified gyral pattern, which means there are fewer ‘folds’ in his brain than average. That doesn’t seem like a big deal, but the folds affect cognitive function. So, while we don’t know exactly how this will impact his life, we have been told we should expect him to be developmentally delayed to some degree, and this could range from unaffected to profoundly affected. Many children with microcephaly have a shortened life expectancy, and while we hope that is not the case with Grayson, we are aware that it is a possibility.
At 3.5 months old, Grayson had his first seizure. It didn’t look like a classic seizure or the very exaggerated portrayals on TV. There were no jerking movements. It happened while he was sleeping, and we weren’t even really sure it was a seizure. Our only indication anything was wrong was his cry sounded weird. My husband had the presence of mind to record it for the neurologist. We took Grayson to the ER to be evaluated. We were there for several hours and they ran lots of tests, which all came back normal. He had no more episodes that day, so we were discharged.
A couple of weeks later, he started having absence seizures. We were on our way home from an appointment and luckily my husband was driving, so I was able to climb into the backseat. Absence seizures can be hard to catch/notice. Grayson’s eyes were fixed to one side and staring but not focusing on anything. During this, he was minimally responsive. Sunlight would hit him in the face and he would only move slightly. Normally, he would react to sunlight by slamming his eyes shut and crying in protest. He also didn’t respond much when I tickled his foot. I sent an email to his neurologist with a video of that seizure so she could confirm it. But before we even got a response back, he started having what were clearly seizures.
The first one he had lasted at least 15 minutes, and we thought he had stopped breathing, so I called an ambulance. By the time it arrived, he had come out of the seizure. The frustrating thing about seizures is if the person isn’t actively seizing when paramedics arrive, there’s not much they can do aside from checking vitals and taking them to the hospital. Grayson doesn’t weigh enough yet for us to have rescue meds on hand, so we are unable to stop his seizures if they last too long.
He has been admitted to the hospital for episodes of status epilepticus (long and/or back-to-back seizures) several times in his short life. One of our stays was 5 days long in the PICU while they tried to get them under control. He will sometimes stop breathing during his seizures and has had to be resuscitated, which I think has been the most terrifying thing we’ve been through.
One of the most difficult things as a parent to a medically-complex child is just having to stand by helplessly while he goes through testing, procedures, or even during seizures. In his 10 months of life, he has had two head CTs, an MRI, a chest x-ray, an EKG, two swallow studies, three ABRs (hearing tests), an EEG, genetic testing, and a whole bunch of blood work. His epilepsy has caused dysphagia (difficulty swallowing) and he also has a tendency to aspirate liquids into his lungs. He had an NG tube for a little over a month, but then we were encouraged to have a g-tube placed because it was a long-term problem. The decision to put him through surgery was a hard one, but in the end, we chose to go ahead with it.
Through all of the testing, they have been unable to find a reason why this happened. I didn’t go out of the country while pregnant, I wasn’t exposed to Zika, CMV, or toxoplasmosis. He didn’t have a stroke in utero, and there is no gene to blame. We’ve concluded it’s most likely a genetic mutation there was no way of preventing or even being aware of.
Being so young, he doesn’t understand what is happening or why he has to go through these things. During some of the tests, we haven’t been allowed to be with him, and it’s so hard to hear him crying and not be able to go and comfort him.
By far, the hardest part of all of this has been not knowing. The doctors can really only give us an idea of what we could expect, but even then it’s just a guess. They don’t really know how he’ll develop or what he’ll be able to do or not do. Probably the most common phrase we hear is ‘wait and see.’ We have been told he may not smile, laugh, talk, walk, etc. So far, he can smile, laugh, and he babbles a lot! He started rolling over a few days before he turned 10 months old. He does very well with solids, and really enjoys trying new flavors. I can see the excitement on his face as I bring the spoon to his mouth, and oftentimes he just smiles and giggles while I feed him.
We had no idea there was anything wrong before he was born. His whole life has been an emotional whirlwind. When you picture having a child, you never dream of them having disabilities or challenges in life. We’ve had to let go of what we thought our life together would be and try to find a new normal. At the beginning of our journey, I would find myself being a bit guarded because we never knew what kind of news we were going to get from the doctors. I constantly felt like we’d be hit with some terrible news or he’d suddenly be taken from us. There is a very real grieving process that you go through–you grieve for the life you thought you were going to have, the child you thought you’d be raising, and the realization your life is never going to be the same again.
His older sister, who is 4 years old, has been a great help to us though. She knows what to watch for with his seizures, and can come tell us if we’re not in the room when one starts. Although we’ve explained his condition to her, she just loves him the way he is. Today, she told him he’s the best brother in the world. She is so very proud of him! She always shows him off to her friends, and as soon as he wakes up in the morning, the first thing she does is sing his ‘Good Morning’ song she made up for him. She can’t wait to share a bedroom with him, and tells me all the plans she has, including how she’s going to take him on all the rides at Disneyland soon!
She always tries to make sure he’s not left out and things are fair for him. Even if it’s not something age-appropriate, like going to a movie or getting ice cream. Last week, she shoved a donut in his mouth because she wanted him to try it (side note: he loved it). When she gets a sticker or lollipop at his appointments, she always grabs an extra one for him. Even though he’s not old enough for some of it yet, this is such an amazing testimony of the sweet person that she is. She has an amazing ability to see past any of his imperfections, and I admire it so much. I really do want to be more like she is. She doesn’t notice that someone has a disability or is different from her. She sees how they’re similar. She sees a new friend to love. Everyone is special and amazing in their own way, and they deserve to be treated with love and respect. She naturally understands how to love unconditionally. I hope to one day be more like that myself.
I truly see Grayson as the blessing he is. I wouldn’t have chosen this for him or for us, but I wouldn’t change it either. My marriage and family are stronger for having gone through these things together. I have learned to be more compassionate and empathetic toward others. And oh my goodness, how much I have learned about seizures and brains!
Learning to let go and take things as they come has been difficult, and something we’re still learning to do. Our life, as we knew it, has been turned upside down. It’s stressful living that way, everything seems so tentative. But it has also helped us to be more present and learn to enjoy the moment we’re in. We try not to compare Grayson to other kids his age because it’s not a fair comparison. Yes, I know what he’s ‘supposed’ to be doing, but we’ve learned that he’s going to do things on his own timeline, when he’s ready to do them. And it’s so much sweeter when he does hit those milestones. He’s already surprised us a lot, and I know he has a lot more in store!”
This story was submitted to Love What Matters by Rachel Taylor of Provo, Utah. You can follow her family’s journey on Instagram and Facebook. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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