Friday, April 6, 2012

I Did Not Birth a Syndrome

I'm honored to host today's guest post from Momma Jorje. Jorje and her husband Elmo recently welcomed a new son, Spencer, who has Down Syndrome. This post was written just a few weeks after he was born, and it details some of the ways Spencer displays characteristics of DS, and some of the ways he doesn't. Please read to the bottom to learn more about today's lovely guest blogger.

As Spencer was born, placed on my belly, and then taken across the room to be checked over, my husband and I were both watching and checking for obvious Down syndrome markers. We knew there would be some and we were fine with that. We just hoped they wouldn't be overly obvious. I discussed the possible physical characteristics in my first Down Syndrome Awareness Month post.
When they took him across the room, Elmo quietly told me he hadn't noticed any traits. I had. I noticed that he has the flatter nose bridge. I also noticed his eyes have a slight upward slant, often referred to as "almond eyes." And I also noticed loose folds of skin on the back of his neck.

Most of all though, I know we saw our son. I thought it was super sweet that my husband had overlooked these things. He hadn't seen them at all! And let me tell you, he generally has a keen eye for these kinds of details!

Since then (3 weeks ago), we've had time to get to know our son better. One of my main concerns was low muscle tone*. It is very common among babies with Down syndrome and can make breastfeeding very difficult (if even possible). I mentioned during pregnancy that Spencer certainly didn't feel like he had low muscle tone! But really, how can you determine something like that while in utero? Well I was right! We aced the muscle tone! Spencer latched on within 30 minutes of birth!

By comparing him to the list I posted before: He does have the flatter nose bridge*. He has ever-so-slight epicanthal folds at the corners of his eyes. He does have a tiny mouth. In the NICU, if he puckered up, I couldn't stuff my nipple into his mouth. I think he has small ears* and small ear passages, but it has been a couple of years since I had a newborn. Maybe they just seem small.

Spencer's head is a little on the small side and he has loose folds of extra skin on the back of his neck. I can't decide if he has shorter fingers (especially the 5th finger) or not. It is hard to tell with such tiny little hands in the first place.

Sasha & Spencer's FeetSasha & Spencer's Feet

He definitely has a gap between his first and second toes* and a deep crease in the sole of his foot in this gap. The funny thing about this... I've always called my babies "Monkey Toes." This stems from them all having my long slender toes and because I just love baby feet and toes! Spencer doesn't have long slender toes, but he does have this gap. It is more reminiscent of monkey's toes than my other babies! I absolutely adore his special little feet! I can't tell if they're flat or not.

This leaves plenty of possible features in the "grab bag" that Spencer didn't get. We had seen him stick his tongue out on our U/S a couple of times, so I was surprised that he doesn't stick his tongue out more. He did have some tongue thrusting issues, but the Speech Therapist worked with him on some bottle feeds and this doesn't seem to be an issue at all anymore.

I had some family members that came up to the hospital right before the NICU opened back up (from one of their 4 daily closures). They had a new baby arrive, though, so were slow to open or answer their calls. While we waited so they could see Spencer, I was asked "Do they still think he is retarded?" I don't know why I was so shocked. This particular branch of family has expressed absolutely no interest in learning about Down syndrome.

They gave up and left without seeing Spencer at all. The NICU opened back up within minutes of their leaving. I wasn't sorry they didn't get to see him, not at all. It does kind of weigh on me, though, that these family members (we're not talking extended here) still haven't seen our 3 week old son. And yet I hesitate to take him to see them, either.

I'm not offended by the R-word. At the same time, I am very offended that these family members haven't tried to learn anything and also that they assume Spencer is retarded. That word does not apply. Seriously, it just doesn't.

I think we were afraid of birthing a syndrome instead of a baby. I think we're offended that others might see Spencer in that way. Now that he is here with us, we certainly don't see him as a syndrome at all. Sure, every once in a while I catch him from a certain angle and his common DS features align and I see them. I do. But more than anything, I see and love our perfect little boy. I hope my family can get over their hangups and see him for who he is, too.

We did not birth a syndrome. We birthed a perfect little baby boy!

* These are the most common physical traits associated with Down syndrome.

About today's guest blogger, Jorje of Momma Jorje:
I am a slightly crunchy momma (and wife!) embracing my crunchiness and striving to be ever crunchier. I am passionate about breastfeeding, co-sleeping, baby signing, elimination communication and general attachment parenting. I am currently obsessed with hitting the road full time to unschool with my family. I am also interested in tarantulas, macro photography and becoming a minimalist. I have two daughters: Tyler is nearly 13, Sasha is nearly 2. I had one more, whom my mother adopted, she is a whopping 21 years old now! I have been married for 2 years. We've just expanded our family with our last baby, Spencer!

This post has been edited from a previous version originally published at Momma Jorje.


  1. I love this article, Jorje! Thanks for hosting it, Amy, so I could read it again.

  2. This was a great post. I feel so sorry that some of Jorje's family has acted the way they have. :( That being said, way to go, Mama, for having that instinct to both protect and unconditionally love your child.

    1. While my family (or that part of it, anyway) still expresses nearly no interest in learning information about Down syndrome, they do show love for Spencer. The topic is generally just left unmentioned.

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