A Change in Focus, Enter: Arthrogryposis
By: Fatherhood
Tags: Parenthood, Disability, Arthrogryposis, Newborn, Fatherhood

When I started this site a few months ago, I wanted it to be a fun, more light-hearted blog, following the exploits of my wife’s pregnancy, along with the exploits with our newborn son, while I tackled being 40 and being a new father again for the first time in over a decade. Along with the blog, I wanted this to be a site for Dad’s, expecting Dads, and families by highlighting different products, doing a little entertainment and pop culture coverage that had a family spin on it. That essentially sums up the site, to this point. My newborn son, however, decided to change things for us.

He had the perfect name, the perfect birthdate, and we had all these ideas and plans in our head, my wife and I. He still has that perfect name, and the perfect birthdate, but the plans we had, the life and future we thought we were going to have, died the moment the Doctor pulled our son from his mother’s womb.

Unbeknownst to us until his arrival, our son suffers from arthrogryposis.

What is Arthrogryposis?

So what is Arthrogryposis? Well frankly, we’re still learning that, but from John Hopkins Medicine:

Arthrogryposis, also called arthrogryposis multiplex congenita (AMC), is a term used to describe a variety of conditions involving multiple joint contractures (or stiffness). A contracture is a condition where the range of motion of a joint is limited. It may be unable to fully or partially extend or bend.

So that pretty much sums up our little guy. His arms/hands and legs/feet both appear to be affected by this condition. We’re still figuring this all out, and as I type this sitting in a hospital bed, we don’t know where the future is taking us.

We’ve already had countless doctors talk to us, apologizing and having us answer the same questions over and over again. Emotionally and physically exhausted doesn’t begin to describe how we feel.

What we know

So, up to this point, this is what we know:

My wife’s doctor, due to my wife having some hypertension and our son being breach, decided at her last appointment to go ahead with the c-section 10 days earlier than scheduled. Cool, cool. Except he dropped that on our lap, 17 hours before the scheduled procedure. So to say that caused a mad scramble is an understatement.

The aforementioned hypertension and breach are really the only issues that were experienced throughout the entire pregnancy. We already know that the signs of arthrogryposis during pregnancy are lack of movement from the baby and low amniotic fluid. Our little guy was constantly moving and the doctor during ultrasounds was always talking about how much fluid he had, so we never had forewarning.

No one had any idea or any clue until he was born. So there are going to be countless tests in the coming days, including x-rays, ultrasounds, MRIs, and genetic tests to try and determine the cause.

So our future is wide open and unknown.

No doubt there will be plenty more posts coming, and I would love any comments or contacts for more information. We’re learning as much as we can, as quick as we can. Our son may not have come out how we expected, but he’s our son, and this is our journey, and we’re going to take it a step at a time.