Something really scary for Halloween

It’s only been one and a half months since we learned there may have been something amiss with Henry. Since then, I have been earning what might equate to an elementary degree in fatal infant diseases. These horrible, often life-threatening conditions forge parents into warriors and experts in their own right. I hope parents of healthy children know how fortunate they are.


I just learned about late infantile batten disease – a neurodegenerative disorder. Infants with this disease have poor eyesight, seizures, and start showing signs with slight personality changes. This can include slow learning progression, clumsiness, poor speech,  and other physical symptoms (slow head growth, poor limb circulation, curvature of the spine, and much more).

I heard about batten disease through a facebook group that I am part of, dealing with pregnancy and infant loss. Amelia is a little girl struggling with this condition. She may live to be five or 12 years-old, depending on the progression of the disease.

Batten reminds me of Krabbe disease – another fatal disorder that affects the central nervous system. Infants also begin to show signs of slowed growth progression and become lethargic, often needing respiratory support. There also may be a loss of vision and hearing, and limited movement. Little Lauren is living with this condition (I went to high school with Lauren’s mom). Her life expectancy can be to two years, or longer (with hope and prayers and research).

There are so many things that a baby can have. I only knew about brittle bone disease through one of my favourite movies, Amelie. Mr. Dufayel, the fictional l’homme de verre (man of glass), who has every corner in his apartment and joint on his body padded to protect himself from breaking bones, and lives as a recluse must have osteogenesis imperfecta type 1.

How could I have known that there was a fatal form of this genetic disease? Osteogenesis imperfecta type 2 is rare, incompatible with life, and what caused my son to only have a short life in my womb.

Then there’s MTHFR, which is an enzyme/gene defect that can cause neural tube defects, several forms of cancer and chemical reactions that a typically growing baby doesn’t have, essentially cutting their lives very short.

So many miscarriages are due to conditions that are incompatible with life. Many happen too early to really detect what went wrong.

And the two last heartbreakers I’ll write about are the maddening, unfathomable, mind-blowing, life shattering SIDS and stillbirth. I’ve read that 50 per cent of these deaths have unknown causes, blindsiding parents who thought, or actually did, bring home who they thought was a healthy newborn.

So if you were looking for a good scare on Halloween, I hope I delivered. And there’s so little I know and understand. It’s amazing anyone is born “normal” and that anyone has healthy pregnancies. I want a baby – it’s high on my to-do list, but what are the odds of actually having one that will live, even if I get to bring my future son or daughter home?


Faces of Loss, Faces of Hope

Henry’s story is now posted to Faces of Loss, Faces of Hope.

Faces of Loss, Faces of Hope is a place for us to come together and share our stories and our faces with others who may be looking for reassurance that they are not alone.”

I’m sad but relieved to join the legions of women (and some men) as they retell their heartbreaking stories on this site. I even found a few moms who had lost their children to osteogenesis imperfecta type 2. It’s a terrible thing to have in common with someone. But alas, life can be shit sometimes, so there you have it.

The site helps destigmatize loss, because so many women (and men) suffer in silence. We either feel too scarred and brimming with tears from our experience to talk about it, or we feel that no one really understands what we’ve gone through. There’s no point in bringing it up because, as we are hyper-aware, nobody really knows what to say to us. So we often hear things that hurt us rather than their intended aim of providing comfort. Well, my blog and other projects, like Carly Marie‘s blog, Still Standing Magazine, Small Bird Studios, and so many others, bring our grief to the forefront and, I think the only time we’ll stop talking about our angel babies is when we finally join them.

My post is a mashup of several stories from my For Henry pages, so you won’t read anything new in my story, but please visit Faces of Loss, Faces of Hope anyway for the messages of hope woven delicately into the free expression of tragedy.

With peace,