How an online community and rare disease tool restored my faith in parenthood

Guest Blog 

Danielle Drachmann talks to RARE Revolution about the condition idiopathic ketotic hypoglycemia, (the most frequent cause of hypoglycemia in children between one and five years of age) hypoglycemia can be a life-threatening event. This is a condition that she and her two children have, which has led to Danielle setting up the website Hypomom, a platform she uses to share stories from a family with hypoglycemia and offering tips and advice about living with this

Danielle and her children

Becoming a Mom
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​When it was time for myself to enter the magical realm of motherhood, I was perfectly aware that I had been equipped as well as anyone could be!

​After all, my wonderfully resourceful and caring mom had been bestowing on me, several lectures about responsibility, baby poop and the ever-looming nightmare for any new parent - a few promising years of postpartum life, operating on just a few hours of sleep! ​​

​But just like other rare disease parents out there, no one could have ever prepared me for what life had in store. I’d like to present to you two very different perspectives on motherhood. Before, and after the realisation that our ball of sunshine was a particularly special one!

• 4 December 2014, I was a young, naive 23-year-old girl excited to be introduced for the first time, to the greatest treasure, my newborn baby boy. My life until this point had pretty much consisted of eating chocolate cake, feeling a bit scared by the thought of what my own body would potentially go through giving birth. 
• 6 December 2014, everything changed. I suddenly became aware that a blood glucose of 0.8 wasn’t quite as good as I thought it was. In fact, those were the digits that became seared into our minds.

My baby, Noah, had just had a rough night with lots of screaming and unease before he went to sleep, well what I thought was sleeping. I remember the student nurse standing with her blood sugar device, staring terrified at those two digits on the screen, her face turning ghoulishly white, before she proceeded to push the emergency button, and then she pulled my baby boy from my arms, sprinting out of the ward as if chased by a lion.
 
I flew up from my bed and rushed after the student nurse following her further into the hospital. In that moment I ceased to be a child, and my life as an adult began, forced by circumstance and necessity, into a journey I never thought I had the strength to live through.
 
Neonatal intensive care unit

Weeks later, after I had accepted Noah did suffer from a blood glucose related rare condition, I found myself in what felt like a different planet, attending the hospital ward with all the other very sick kids. I was juggling foreign words, hypoglycemia terms, the creaking sounds of breast pumps, alarms, crying parents and very sick newborns and glucose drops, while facing an army of doctors and nurses at what became known to me as the NICU.
 
I forgot it was difficult. I forgot I didn’t knew how to be a parent. I forgot I had to learn to navigate this new planet, with their foreign language and their hierarchical culture from scratch. I forgot I had had another life just a few days before I crashed down to this strange place, where I four years later, I find myself well-established in what is in fact a great life for me and my rare disease children. 
 
The years of being a rare-disease-parent has taught me my biggest superpower: Trusting my gut and reaching for the right mentors and specialists. These people have all been willing to teach me everything Google and the library couldn’t, arming me with a special needs parents strongest weapon in the fight of protecting your child: Knowledge.

Noah

A rare disease diagnosis

My children and I suffer from a condition called idiopathic ketotic hypoglycemia. We wear blood glucose sensors also known as CGM monitors, eat cornstarch and receive dietary prevention and emergency treatment through g-tubes. We live life with a rare disease, like so many of you out there. If you’re a rare disease parent, chances are that you’ve been through a lot of the same struggles as we have, as we try to navigate the ins and outs of our condition in a pursuit of a somewhat “normal life”.

​How I managed to let go
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After the early years of childhood with my wonderful hypo-kids, one day I found myself sitting with Noah who had turned into this little human being with an actual personality, old enough to go to kindergarten and begin his first day in his life as a big boy.
 
Although every inch of my body wanted to embrace my children forever in our safe concrete bubble made from love, fear and delicious fat baby cheeks -  the reality knocked on the door: Noah was starting in kindergarten, and he really needed it! 
 
And to be honest, I did too. I needed to talk to grown-ups for a change, after singing “The Wheels On The Bus” for the 50th time in a day for four years, while also being tasked with handling everyday life, ambulances and seizures. Not an ideal cocktail for any new parent, and especially not for four years without breaks.
 
I faced my fears and wrote down what scared me the most. I came up with the following:  

1.     What if the staff forgets what to do, by the different blood glucose values?
2.     What if the staff is so uncomfortable taking responsibility for him, they end up excluding him in order to protect him?
3.     What if one of the kids ends up in a seizure, and they forget important info to the paramedics?
 
I mustered up all the courage in my body, picked up Noah and went to kindergarten - ready to tell them about my beloved child, who unfortunately came with a rare disease and special needs. We sat down, while Noah investigated the playground with all the other kids. The last thing I wanted was for my child to live a Dear Evan Hansen like reality, caged out from the rest of his peers.
 
What I witnessed in my son’s eyes when he was staring out into the playground was anything but frightful though. He was so excited about this place, new stuff and new kids. His excitement melted my heart, but I was also terrified of how much adrenaline and physical activity would be in store for him, so I was also fearful that it might trigger an incident.
 
After 20 minutes of explaining our situation and requirements for Noah, to the member of staff at his kindergarten, I drew in a deep breath, waiting for their response. After giving me an awkward glance, the kindergarten staffer noted the following: “So, he could end up brain damaged or worse in our custody, if we don’t discover he is in hypoglycemia?” Well, yes. That is in fact the case, and why I lay sleepless at night. 
 
2 minutes later Noah ended up in hypoglycemia after an hour on the playground. My worst fear realised.
 
After stabilising him with juice and bread and having left the kindergarten, I cried. The staff had been terrified. And so was I. I considered the situation:

• As a parent, your knowledge has taken several years to build up
• Your average staffer at a kindergarten likely knows next to nothing about hypoglycemia, cystic fibrosis, epilepsy or whatever rare condition your child might suffer from.

 
How would they ever be able to remember everything I told them of my child needs? To be honest, I myself have difficulty remembering everything when an emergency arises. I once I forgot Noah's social security number and could not remember if it was him or Savannah who reacted on Glucagon (and I’m their mother for goodness sake!).
 
If I can forget about life saving information about my kids emergency treatment, how could these strangers possibly be expected to?
 
The blood sugar guide

After that heart-wrecking day, I got an idea. I sat down and had a heart-to-heart conversation with my brother, Nick. He happens to be a classically trained graphic designer. After balling my eyes out for a while, I asked him if it was possible to produce some sort of easily accessible rare disease guide, to help kindergarten staffers navigate tough situations for special needs kids.
 
If I were to leave my kids in the hands of strangers, I needed the information in my head to be in a physical guide that I could trust anyone to follow. The first variation of the guide was sloppy, but with it, we ensured that we could provide the institutions a visual representation of how to react in any given scenario!
 
The guide helped us to move forward with new found enthusiasm. We feel like we’ve been able to give our two wonderful kids, the gift of childhood and the gift of friendship through their little buddies kindergarten and whatever lies ahead. We’re no longer terrified and on the verge of a nervous breakdown whenever we need the kids to be on their own, as long as we make sure the guide is handed over to whoever gets to look over our two wonderful balls of sunshine!
 
We feel safer than ever, and thanks to a combination of proper diet, a state of the art blood sugar guide and a loving online community, we can safely say that we’ve been on the journey of our lives, and each one of us in our little family are thankful for anywhere that fosters a safe space for parents of rare disease children.
 
Our hope is to open up this tool to include all rare disease children in the world. The guide is a tired but determined mom’s gift to anyone out there!
 
Thanks to years of work, we’ve finally acquired an understanding of how we should live a great life with ketotic hypoglycemia, which has been the underlying mission of Hypomom - to share everything we know, and show people out there, that you can live, and live well despite a rare diagnosis.
 
It took us a while to get here, but through many tests, trials and lots of lost nights of sleep, we’ve finally established a good understanding of our kids’ condition and special needs. We can’t quite claim victory on our own here though, as a close personal network of like-minded parents from all over the world have helped tremendously. Hypomom essentially brings an array of resources for all you rare disease parents out there, including:
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• Blood sugar guides and other resources
• How To guides on how to manage, clean and operate your blood sugar equipment
• Recipes and walk-throughs for special blood sugar needs
• And much more.

 
Would you like a guide for your condition? You can contact us and let us know what you need in your guide, and we will make it happen here at Hypomom.com* 

Best regards
Danielle Drachmann

*This guide is a free service offered by Danielle at Hypomon.com

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