• Deborah Charles-Nelson

'"Benign Neonatal Sleep Myoclonus"...?'

Updated: Nov 2, 2018

I'm pretty sure you clicked on this blog post because you read the title and thought,

"what's that!?"

That was exactly how my husband and I felt, when we were given this diagnosis by the hospital paediatrician, just four days into parenthood.

We had noticed that our son Ethan was constantly jerking in his sleep, and (of course) as a new mum, I was a little worried, so as per usual, I did some research online and discovered that it is quite normal for newborns to have a few jerky movements during sleep, so I put it off. But, as family and friends would come over to meet him, they would always mention his sudden movements during his sleep. This is when I started to get quite worried.

After doing more research, words such as epilepsy and shudder syndrome came up, all of which were extremely worrying for a first time mum. The final straw was when a close family member looked at me and said, "you need to check this out, it doesn't seem normal."

At that very moment, with an anxious heart, I held my baby in my arms so tight and wept in prayer. The feelings of worry, anxiety, embarrassment and fear of what it may be began to consume me. I felt my heart in my hands as I peered down at this new life, twitching as he tried to sleep.

I immediately called my husband, who was on his way home from work, and with a break in my voice from crying, I told him that we needed to take our son to the hospital. We arrived at the hospital and, to our surprise, we were quickly seen (as he was only a few days old at the time). And that is when the paediatrician told us that he had something called benign neonatal sleep myoclonus. We sat there confused and fearful at what this meant, but, God be praised, she explained that it was merely a movement disorder that typically starts within the first 2 weeks of life, occurs during sleep, and subsides within the first year of life. We were beyond relieved that it didn't turnout to be anything long-term or a serious health condition.

But the whole situation got me thinking, more mothers need to speak out on the challenges, and stop suffering in silence. If more of us talk or write about our experiences it will save a lot of mothers from the feelings of worry, guilt and panic, to name a few. In a nutshell, it is hard to prepare for your life changing overnight. You can plan the nursery, buy the crib, the bottles etc. But there's no way to know exactly what you'll face. This is where faith is so important for me. Mamas, we have to trust in God's perfect will for our lives and say,

"I have no idea what I may face today, but Father, help me to be in a position to receive it."

So when worry or fear begins to overwhelm you, remember to be, “strong and courageous! For the Father is with you; He will never leave or forget you.” (Deut 31:6)

You've got this, mama! xo