Type 1 Diabetes

Why I am afraid to sleep at night.

On Saturday night, a 10 year old girl with Type 1 Diabetes named Sophia, from Pennsylvania attended a sleepover at her best friend’s house.

Her best friend also had Type 1 and her parents were both medical professionals. The girls referred to themselves as “Diabesties”.

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During the night, Sophia was found unresponsive as a result of a low blood sugar. CPR was performed until the ambulance arrived and she was then life flighted to the nearest children’s hospital in Pittsburgh where she remained intubated and unresponsive.

Over the following couple of days, various CT scans were performed and doctors discovered that the low blood sugar had caused a brain injury and as a result, her brain was extremely swollen and her brain stem had herniated.

Yesterday on the 19th September 2018 at 3:44pm, she was declared brain dead and passed away in hospital.

This beautiful little girl, who had everything to live for, snatched away in the middle of the night.

I cannot begin to imagine what her own parents and the parents who were taking care of her must be going through. She couldn’t have been in a safer environment and yet it wasn’t enough.

At first, I assumed she didn’t have a glucose monitor and had dropped dangerously low in between night checks but as the week went on, I found out that she was in fact wearing a CGM. Her parents were alerted of her low blood sugar and immediately contacted the parents at the sleepover who immediately checked on her but it was too late. She was already unresponsive.

Despite her parents providing her with the best technology money can buy in order to keep her safe, it wasn’t enough and this cruel and relentless disease still managed to take her.

Sophia wore the same CGM as Fin.

The app that alerted her parents is the same one that alerts me through the night.

And I am not going to lie. I have been terrified to go to sleep this week.

After the news last night, when I went to bed, I put Fin’s alarms on loud and propped his bedroom door open. I put my phone alarms on loud and also took Andrew’s phone to bed as a backup in case mine failed. I set the actual alarm clock on my phone for 2:30am and 5:00am in case both Dexcom apps failed and I also set the alarm clock on my bedside table as a final back up.

And when bedtime approached, I had to fight the urge to sleep at the end of his bed all night long because despite the numerous alarms I had set, I was terrified they wouldn’t be enough.

When I was awoken at 2:30am and I checked his blood sugar on my phone and found it to be at a safe level, I still crept into his room, lay down with him for five minutes, held his hand, kissed his cheek and listened to him breathe and as I lay there looking at his face, I couldn’t stop the tears as I thought of Sophia’s parents all those thousands of miles away and the sheer hell they must be going through.

This statement was released from them yesterday:

“While we didn’t get our miracle, multiple children all over the country will be receiving theirs as Sophia is giving the gift of life by being an organ donor. Thank you all for your prayers and support. Though her beautiful smile and warm hugs will be truly missed, Sophia will continue her legacy in everyone’s hearts!!!”

I cannot begin to imagine how they will ever get over this.

Sleep tight beautiful girl, nothing can harm you anymore xx

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