Tag Archives: Cri du Chat

Did you know Olivia has Cri du Chat Syndrome?

I know you know that Olivia has beautiful brown eyes, gorgeous and luxurious chocolate brown hair, freckles splayed across her cute button nose and a personality that never quits…but did you know Olivia has Cri du Chat Syndrome?

This week is International Cri du Chat Awareness week. Our goal during this week is to educate and inform about our children’s syndrome. We are small but mighty and trying to raise awareness of our syndrome.

Cri du Chat (kree-doo-shah) is also known as 5p- Syndrome. Olivia is missing part of her 5th chromosome…the p part! It just fell off during conception and here we are today! It’s called Cri du Chat because of the cry that most of the children have when they are born that sounds like a kitten. We were lucky to find out when Olivia was just 4 days old through a blood test. I say we were lucky because we were able to start her in early intervention right away. Some families don’t find out about their child’s diagnosis for a long time.

Olivia’s syndrome is rare; it is estimated that only 50-60 kids are born with Cri du Chat syndrome each year in the U.S. There is definitely a spectrum of effects and abilities. However, most of our children are nonverbal, have mental retardation, low muscle tone and similar facial features. You know what is really cool? They all LOVE the water and are very sweet and loving.

If you wouldn’t mind taking a few minutes to learn a little more about Olivia’s syndrome, visit here and watch our “I Can” video here. Olivia is sending you a thank you hug right now! You know what would be even better? Tell a friend about it too. Spread the awareness and the love.

Alone for the First Time

**To catch up on this Flashback Series, click the link at the top of the page**

Before She knew it, Monday morning came. He was student teaching and had to go back to work. She was going to be alone with Baby Girl for the first time since she was born 6 days earlier. She was still reeling from the diagnosis, let alone just learning how to be a Mom. But She could do it. He felt terrible that He had to leave; He didn’t want to go and leave his new baby or leave Her alone. But He had to.

The day before her father-in-law had stopped by with all the information he could find on the internet at the library. He was thrilled to be able to tell them that there was an 80-year-old woman in Australia with Cri du Chat. Apparently one could live longer than a year. Interesting. The doctor didn’t know everything apparently.

She was so unsure of what to do. She had this little girl with this syndrome and She knew Baby Girl would need extra help…but what should She do? The doctor hadn’t told her anything and this was completely uncharted territory and She surely did not know how to navigate it. Her Mom happened to have a friend whose son had Down Syndrome; Mom called her to see what she could find out. This angel of a woman told Mom to have Her call the local board of mental retardation first. They would be able to help Her navigate.

As soon as the clocked turned to 9 on that first alone morning, She called the board of mental retardation. She didn’t even know exactly what to say. When the woman on the other end answered, She just began to cry and tell Baby Girl’s story. The woman was so kind; she told Her she was brave and strong for calling so soon after Baby Girl’s diagnosis. They scheduled an appointment for Baby Girl to be evaluated in 4 weeks; until then, the woman encouraged Her to find support groups and to try to contact the national society for Baby Girl’s syndrome. With a plan, She felt slightly better. A little.

As the day went on, She fielded calls from well-wishers and extended family. She managed to get through them all; for some reason She couldn’t tell. She couldn’t get the words out to tell all of these people that there was something wrong with Baby Girl. They wouldn’t come out of Her mouth. So She faked Her way through the phone calls and pretended as if everything was ok.

Later in the day when Baby Girl finally slept, She decided to brave the internet. It was 2001 so the internet was still fairly new, but there was still quite a bit of information out there. She searched for Cri du Chat. The first website that came up was written by a woman who had given her baby up for adoption after finding out the baby had the syndrome. The woman felt guilty but was sure that this was the right decision because she couldn’t possibly raise a baby with such severe needs. That was not was this woman signed up for in life.

The second website she clicked on was about a little boy with the syndrome. He wore a helmet; he couldn’t do much; his Mom went on and on about all of the things he couldn’t do; she also included many details about his inability to eat and how he would bang his head against the wall all day long.

She lost it. She started sobbing uncontrollably. She dialed Mom.

“I can’t do it. I can’t be Baby Girl’s Mom. I can’t. I’m not strong enough. I can’t, I can’t, I can’t…” She said.

“I’ll be right there,” Mom said.

Mom came right over after taking the afternoon off from work; Mom held Her while She cried and helped with Baby Girl and tried to assure Her that She could indeed be Baby Girl’s mom. She could do it. She had to.

That day, She decided that if there was ever a time when She felt better and stronger, She would make a website of some kind. She had no idea how anyone made a website but someday She would figure it out. At that moment She knew that someone had to put some positive information out there. This journey couldn’t possibly be all negative. There was, after all, a Baby Girl here on this Earth who was beautiful and who was loved. That was positive and that would be what She would write about someday.

Olivia Vs. Water

After my post last week, I realized that I never posted about a seriously scary incident that happened last summer. I think I was too traumatized to write about it at the time.

Every single child I’ve ever met that has Cri du Chat loves the water. I’m not talking about oh-sure-I’d-like-to-take-a-bath love of water, but serious crack addiction love of water. Olivia is no different. She is obsessed with water. We have child-proof locks on all of our bathroom doors in order to keep her from flooding the house—but she still manages to get in sometimes. If there’s water, she wants in it and she wants in it now. It’s great but at the same time, it’s scary. And annoying.

Last summer, three of my friends from high school decided to meet at a park to catch up and let our kids play. This particular park has a pool but it wasn’t open until 11 and we would be leaving before then so I wasn’t worried about keeping Olivia’s interest away from the water.

We settled in and started playing. The kids played on the swings, the monkey bars, the merry-go-round, the slide. My 3 friends and I split up so we could keep track of everyone. One of my friends was in charge of the sandbox area and that’s where Olivia was playing. (Did I mention she also has a deep love of sand and dirt? Mixed with water? Now you understand why summer is stressful for me…)

I stood talking to my other friend and all of a sudden I noticed that Olivia was not in the sandbox anymore. I hollered over to my friend “Where’d Olivia go?” She was literally standing right next to her. She didn’t see her leave. I thought it was no big deal she probably just went over to the slide. My boys were helping to look and starting to get worried as well. Nope, not there. Ok, she’s probably over on the merry-go-roung or tire swing. Nope, not there. I’m starting to panic a little. But seriously, we were all standing right there and now she’s gone.

All of a sudden it hits me. The pool. The one that’s not open yet.

I tossed off my flip-flops and ran as fast as I could. My boys were right behind me.

I passed the “guard” who was checking people in for swimming lessons. He was reading a book and had his ipod on. Clearly not someone who’s going to notice a fully-clothed little girl with special needs heading for the pool.

I finally got to the pool and there she was in all her glory. Fully-clothed, shoes, glasses and all, splashing around in the shallow end. Thank God she was ok. I felt like I was going to throw up with relief. I grabbed her out of the pool and hugged her tight. I really couldn’t yell or get mad because she didn’t know what she did was wrong.

After I finished hugging her, I looked around. There were 5 Moms sitting in lawn chairs reading magazines while their kids were taking swimming lessons. Not one of them tried to stop Olivia or get her out of the pool or came looking for me. Not one. I’m sure they were judging me for letting her get out of my sight…but really they just needed to walk a day in my shoes and see how quickly it can happen. And shame on them for not helping a fully-clothed girl out of the pool and back to her Mom. I can only hope that if she would have gone in the deep end, they would have intervened.

I went back out to the park area with my friends. Two of them I hadn’t seen in years and really didn’t know much about Olivia. They probably didn’t understand. But I was soaking wet, felt like I was going to puke, Olivia was soaked, the boys were upset but relieved. So we left.

I’m pretty sure we all took a good nap that day.

And this is how it is every time we’re around water. Constantly on guard and scared that Olivia will somehow get into the water without us. Because, like I said, it’s her crack, man.