Bumpy Bones: The Question of Kids

June 3, 2015



When I was sixteen years old, I was positive that I would never have kids. I always used to haughtily tell my mother that if I became a parent, it would be by way of adoption. I couldn’t imagine having any hypothetical children inherit this painful genetic disorder. I couldn’t imagine my child suffering through the surgeries, the daily chronic pain, or the insecurities and depression that accompany this disorder. Not having children made sense.


Despite my stance on having babies, I have always been a nurturing soul – animals, children, people with special needs. I loved babysitting, I loved taking care of our many animals, and I volunteered actively at a recreational group for the developmentally handicapped. I loved taking care of people and animals, and sometimes…I’d allow myself to daydream about being a mother myself. My daydreams would always be about me magically becoming “cured”, or my child not inheriting my MHE. But, I was realistic to know that life didn’t work that way – I wouldn’t be magically cured, my MHE was here to stay, and there was no way to make sure my child didn’t inherit MHE.


Three years later, I found myself unexpectedly staring at that plus sign on a Dollarstore pregnancy test. Three years later, I placed my hand on my stomach and questioned every haughty belief I ever had before.


I knew, upon seeing that positive result that I couldn’t just walk away from this. I rejected that idea whole-heartedly. My now husband and I decided to keep the baby, despite the growing concerns from our families. They didn’t know how my body would handle pregnancy. It was never a question of whether or not the baby would inherit the MHE, but whether my body could handle carrying the baby without something severe happening to me.


I knew my parents worries were a bit extreme; I’d known many women with MHE who had been pregnant and carried babies without becoming paralyzed (my parents’ were a little dramatic in their worries; but parents typically are).


To ease everybody’s mind, and my own…I saw a genetic counsellor throughout my pregnancy. I learned a lot of things about this disorder that I didn’t know before. I learned that each child has a 50/50 percent chance of inheriting MHE. I also learned that they can test for the MHE gene on the baby while pregnant. The genetic counsellor told me about the increased risk of miscarriage, and I animatedly refused to preform that test. I knew that regardless of whether or not our baby inherited MHE, it would not be worth the risk of potentially miscarrying it.


My son was born and they immediately drew blood to send to the lab for testing because I did want to know – I wanted to know because I wanted to be on top of things. If our son inherited MHE, I wanted to make sure I had an immediate referral to Sick Kids hospital. When he was three months old, the results came back…Nolan had MHE. This wasn’t surprising to me, as I’d already noticed little things about Nolan that hinted towards MHE – he was more fragile than other babies, the bones in his back and shoulders shifted and creaked when we held him. I thought I felt tiny bone growths on his knees, but the doctor insisted that everyone had those (later, he would develop bone growths in those exact areas…call it mother’s intuition?).


I remember sitting in Nolan’s nursery the night we found out. I was holding him in my arms, rocking him in the dark of his green bedroom amid the gentle white noise lamb I played each night to put him to sleep. I cried quietly, the tears dripping down my cheeks. I felt guilty that my son inherited this disorder, but it didn’t change how perfect he was in any way at all. He was still my sweet little Noliebear, still the light of my life.


I was optimistic throughout our second pregnancy. I knew this baby had a 50/50 chance of inheriting MHE as well, but I prayed daily and told myself this baby wouldn’t have it, because what were the odds of both our babies inheriting MHE? 


Apparently, the odds were pretty high, as in…50/50. Our second son was born, but he felt sturdier than our firstborn. I honestly didn’t think he had MHE and I didn’t push for testing the way I pushed for testing with Nolan. Archer was diagnosed at 18 months with MHE.


They may have inherited my MHE, but they also inherited other wonderful traits from our DNA pool; thick lashes, beautiful smiles.  My sons both have the shape of my eyes – Nolan has my exact color, while Archer has the “Hannigan blues”. They inherited their father’s incredibly thick skulls. Nolan inherited my personality – sensitive, caring, and nurturing, while Archer inherited his father’s personality – stubborn, determined, and a fighter.


I still have guilt about them inheriting MHE. I still worry about their futures, about the bad pain days that’ll come, and about anything and everything else that comes with having a chronic pain bone disorder. But…parenthood is a game of Russian Roulette. There is no “Make a Baby” feature. Even parents with no genetic mutations themselves have babies with genetic disorders. My parents are an example of that; neither of them carry the MHE gene and I ended up with it. I am positive that even if our children had been born without the MHE gene, I would still worry and have guilt over any struggles they face throughout their lives – that is parenting, parenting is worrying about a thousand things outside of your control.


The fact of the matter is…MHE is just a part of who we are. We are also thousands of other things. We are strong, determined, caring, intelligent, and I honestly believe this disorder gives us several advantages. We are empathetic, we are passionate and we embrace people no matter what their physical limitations are. We are advocates and we are warriors.


At the end of the day: parenthood is an individual choice. It is a choice between not only you but your partner as well. If someone doesn’t want to be a parent, that’s their choice…BUT, if someone does really want to be a parent…then be one. You have an advantage: you know this disorder. You’re not going in blind. And yeah, this disorder can suck but it’s not deadly.


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Thank you to Nicole Wynn for designing our logos and contributing her original artwork to our website and our hand-outs.  Nicole is a talented graphic designer who just happens to be living with MHE... you can visit her website at nicolewynn.net

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