How a Surprise Dwarfism Diagnosis Changed Our Lives for the Better
Sutton’s birth was a little dramatic but with the way her whole pregnancy was (hello, Braxton hicks and false labor for weeks!), I wasn’t all that surprised. It was very scary at times, and at one point I was terrified we were going to end up with an emergency c-section. But God showed up again and in His perfect timing, she was born at 11:34 am weighing in at 6 lbs 12 oz and 19 inches (come to find out- she was really 18 inches). We had a whole team in there due to the dramatic birth, but if you want birth story details that’s a whole other dealio.
Almost immediately after birth, we were told that there were some genetic concerns they had about her. She had short hands and fingers, a large head, short legs, narrow chest, and small hips. They immediately sent her for an ultrasound of her brain and an X-ray. This was extremely unexpected and very scary for us. Our pregnancy was normal. Our ultrasounds and testing were normal. So this came out of left field for us.
We got the results back pretty quickly, and for the first time, we would hear the word dwarfism. My first thought was dwarfism? She is going to be small? We got this. Wow! Way to scare us for nothing. Small? We can handle small.
Then came another hit. The neonatologist comes back in and we started asking questions. He said the words ‘Jeune Syndrome’ and I thought “okay, again, we got this. It doesn’t sound too bad.” Until I started researching it. As soon as I did, I lost it! It was in this moment that I realized we may have more on our plate than we ever asked or bargained for. I started questioning if we could do this? Why us? Why our perfect baby girl? What about her life? Her siblings? If you know me at all, you know I go fast, fast, fast so all these emotions are rushing through my head.
Embracing the Beauty of Different
I wish I could say that I just gave it to God but in this moment I did not. However, I can say that even through all the fear and emotions I have had a sense of peace about it. I KNOW deep in my heart she’s going to be okay. I KNOW this is her purpose and her testimony – to bring Glory to God, let his light and love shine through us, and bring awareness to dwarfism. I KNOW that she’s our baby for a reason and I’m her mom for a reason. I may question it, I may fear different things, but deep down I KNOW – our God is bigger than all of this and he has us in his hands.
Once everything kind of sunk in, I really started researching dwarfism and since then, it has been an overwhelming journey. There is so much information out there and a lot of it was a shock to me! Did you know that you have a 1 in 15,000 – 40,000 chance of having a baby with dwarfism? Did you know that 85% percent of children born with dwarfism have average height parents? I know we didn’t know this information, and those odds are pretty crazy! I’ve heard others say that their child with dwarfism is their lottery ticket and I couldn’t agree more. We have won the lottery with Sutton! Another thing that I’ve learned is that there are 200 different types of dwarfism, with Achondroplasia being the most common form.
The unfortunate thing is that while dwarfism is more common than you would think, at the same time, it really isn’t. A lot of doctors around New Orleans aren’t familiar with dwarfism or have ever dealt with it. They have specialists and clinics around the United States and the world that specialize in it though, so we have opted to go see those specialists. At the end of the day, children with dwarfism are of normal intellect and will lead a normal life; they are just a little bit smaller than their friends and family. We feel so blessed to raise this little girl with her big sister and brother! I am open to any questions you may have that I may not have covered, please just ask!
Danielle lives on the Westbank, almost to Lafitte, with her husband Ryan, three children Lexi (6) Abram (3), Sutton (1 month), and furbaby Maverick. She is a stay at home mom who homeschools. She enjoys spending time with family and friends, crafting, watching too much television, and Pinterest.
Wow! Great article, Danielle!!!
My 2 year old girl has dwarfism (short limb type). Dwarfism is not a intellectual disability. I have high hopes for her.
This was a wonderful story. I appreciate that you are sharing your experiences like this, with the world.
I remember when I first met Sutton. She was GORGEOUS (just like your other kids).
After I held her, and Ryan told me that she had dwarfism, I remember telling him, “Don’t worry, since I am somewhat shorter than ALL of my nephews, I’ll take her to the prom”….. Damn, I’m tearing up right now, thinking, “I hope that I live long enough to actually see her go to her prom.”
Dani, just remember, “It takes 5 to make a basketball team, but you need at least 7 w/ the subs”.