I Did Not Birth a Syndrome

Written by NPN Guest on March 21st, 2014

Activism, Featured, General
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dsribbonMarch 21st marks World Down Syndrome Day, chosen to represent the trisomy of the 21st chromosome. In its ninth year, the celebration of WDSD is meant to raise awareness about what Down Syndrome is, what it means to have Down Syndrome,  and how individuals with Down Syndrome help to shape our communities and lives. Most importantly, WDSD 2014 brings to light that individuals with Down Syndrome deserve the same access to suitable healthcare without fear of discrimination and with individualized care that suits the specific needs of the patient. It is important to remember that Down Syndrome is a genetic condition, not an illness, and individuals with Down Syndrome are not inherently unhealthy. Individuals with Down Syndrome may have health problems throughout their lives, and there are a number of known specific health conditions that these individuals may suffer from. Healthcare providers should not only be well versed in how to treat individuals with Down Syndrome, but they should also not discriminate against these individuals by refusing to treat them or overlooking other conditions in light of their condition.

Jorje’s Story

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.

DSCF5639crWhen they took him across the room, Daddy 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!

Over the next few weeks, we got to know our son better. One of my main concerns had been 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!

DSCF5717crBy comparing him to the list of common physical markers: 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 thought he had small ears* and small ear canals, but it had been a couple of years since I had a newborn. I thought maybe they just seemed small. I was right, though, on each of these traits.

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 couldn’t decide if he had shorter fingers (especially the 5th finger) or not. It is hard to tell with such tiny little hands in the first place. I haven’t even thought about this trait again since then!

Sasha & Spencer's FeetHe 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 couldn’t tell if they were flat or not.

This left 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 didn’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. (Did you know Speech Therapists handle feeding issues, too??)

I had some family members come up to the hospital right before the NICU opened back up (from one of their 4 daily closures). The nurses 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 had expressed absolutely no interest inDSCF5874cr 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 did kind of weigh on me, though, that these family members (we’re not talking extended here) still hadn’t met our son 3 week later. And yet I hesitated to take him to meet them, either.

I’m not personally offended by the R-word. At the same time, I was very offended that these family members hadn’t tried to learn anything and also that they assumed Spencer was retarded. That word did not apply. Seriously, it just didn’t.

I think we were afraid of birthing a syndrome instead of a baby. I think we were offended that others might see Spencer in that way. Once he arrived, we certainly didn’t see him as a syndrome at all. Sure, every once in a while (specifically in the first year) I would catch him from a certain angle and his common DS features would align and I would notice them. I did. But more than anything, we see and love our perfect little boy. My family seems to love him for who he is, too. I hope I’m right on that.

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

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

DSCF4508-001DSCF6446Jorje is a slightly crunchy momma (and wife!) sliding down the slippery slope to full-on hippydom. She stays busy with 3 children and is passionate about breastfeeding, co-sleeping, baby signing, elimination communication, and general attachment parenting. Jorje blogs at Momma Jorje where she also advocates for Down Syndrome Awareness. Her family celebrated Spencer’s second birthday in December.

4 Responses to I Did Not Birth a Syndrome

  1. Danielle

    Spencer is one cool dude! Happy and blessed to be part of his life!

    Thank you for voicing the pain and frustration of family choosing not to learn more about their new relative. This can apply to a wide range of differences among kids. Some people are too comfortable with their limited knowledge and assumptions. Ignorance/denial only limits their future relationship with the child and frustrates Mom and Dad.

    Way to be a good advocate for your son!

  2. Michelle

    Jorje, I went through a similar experience before and after Coltons birth. I tried to educate as much before he was born but uncalled for remarks were still made. I ended up not talking to my mother my entire pregnancy. She fell in love with him afterwards though. I still educate as much as possible and im obviously still learning. I am so glad you shared this information though. You are a great person and mother, your children are amazing, and Spencer is exactly what you said, a perfect and healthy little boy. I love his sweet hugs and love seeing him sign. Im very thankful for knowing you both. :)

    • Momma Jorje  

      We still wait for foot-in-mouth statements when visiting family (though THEY don’t seem to realize they taste toe jam), but I guess its a bit easier now that I can see how much they do love him. Perhaps if they made a little more effort to understand, we might make more effort to visit…

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