Friday, January 14, 2011

“I think this baby has a cleft lip…,”

“I think this baby has a cleft lip…,” said the doctor in a very calm, nonchalant tone. I was at my 20 week ultrasound, all by myself, and I suddenly felt like I couldn’t breath. Sound familiar?

Let me back up a bit.

My husband and daughter had come with me a week prior to my FIRST 20 week ultrasound. Everything looked good, but they couldn’t see the baby’s face. They could see the profile, the top, and the view from underneath. But they couldn’t get a straight on shot. Baby boy just wouldn’t cooperate. Because they had seen everything else they needed to see, and what they did see looked perfect, they almost didn’t have me come back. But when they decided to do a follow-up ultrasound, I didn’t complain. I was thrilled at a chance to see my baby again. It never crossed my mind that there might be a problem.

A week later, I went back in for my follow-up, minus one husband and one 2-year-old daughter . There was, after all, no reason for them to come with me.

The nurse did her thing. We got the view we needed and she casually said the doctor would be right in. The doctor did his thing, and then very casually dropped a bomb on me. (Refer to the above) The first thing I said, in a very weak voice was “Are you kidding?” He responded with a casual, "No", and tried to point it out to me in the blur of back and white on the screen.

I did pretty well… for the first few minutes anyway. I was very calm. I immediately bombarded the doctor with questions. As far as I was concerned cleft lips were 3rd world country problems. Did he not realize we were in AMERICA? I mean really, my only knowledge about clefts came from the operation smile infomercials. It definitely didn't happen here, and it absolutely did not happen to MY baby.

He proceeded to tell me that, in fact, he sees a cleft about 2-3 times a month and that it’s the most common birth defect. Okay, that explains the casual attitude, but didn’t he realize that this was MY baby he was talking about? MY child? And then I asked the question that every Mother who has shared a similar experience desperately wants the answer to be “no”.

“Are you sure?”

And like all the responses to all those Mothers in mirrored experiences, “Yes, I’m sure,” hit me like a ton of bricks.

That’s when I lost it.

The doctor left, explaining that the grief counselor would be right in. There I was, in a dark room, all alone, sobbing so hard I simply couldn't catch my breath.

For those of you reading this, I may have just hit a nerve. This account may be all too real for a few you. And it’s in part because of those few of you, that I started this blog.

Also, I wanted to have someway to document our personal journey with Ryker, our son. I wanted something for him to look back at and read, so he could never question how much we love him. We have, and will do anything for him.

It is my deepest desire that this blog will be a useful tool in your personal journey. I warn you, I am not a doctor, and I’m not a specialist. I’m just a Mom who thinks that just maybe, I can offer some insight, information, tips and camaraderie to those of you just starting your unique path.

There is something that binds us when we feel the same pain. We like to know that there are others out there have the same battle scars that we have. It gives us strength to know that we are not alone in our struggles. And to you, you are not alone. You are among some of the strongest women out there. It was some of these women, sharing this same journey who gave me strength when I needed it.

You will get through this. HOW you get through this is up to you.

I promise you one thing, you are so much stronger then you think you are, only someone like you could handle this.

I don’t know if what I have to say will actually help anyone. I’m completely a spaz, I talk way to much, and most of that is out of my ass, but even if this blog ends up being just for Ryker. I know my time journaling will be well spent.


A Little Bit of Love said...

We also found out at our 20 week ultrasound--the second one as well that our son would be born with a unilateral cleft lip and palate. It shouldnt have came as such a suprise to us as it did, as my fiance was born with it, but multiuple doctors had told us that there was really no reason that he would have it, that the chance of him having it was like 3%, that they believed his was in isolated thing,due to his dad being in vietam....well turns out we are the 3%, but at the appointment it was the fartherest thing from my mind and then boom there it was.Our little man will be here within the next few weeks and I am both overjoyed and scared to death. I just wanted to let you know that I have read many many blogs since finding out trying to learn as much as I can, and your blog has been the most informative. So thank you, thank you for the knowledge and insight. And thank you for lettting me know that Im not the only one scared and worried.

Melissa McMahan said...

Hi there, I stumbled upon your blog and only got through this first post and look forward to reading more about your experience and your beautiful baby boy. I'm currently 23 weeks pregnant with twin boys and found out at our 20 week appointment that Baby Boy A has a possible cleft lip. My reaction was similar to yours. No family history and why did one baby have it and the other is fine? We have a 3D ultrasound scheduled for next week to make sure the hard palate is ok. I'm just trying to learn as much as I can since this is all foreign to me. Thank you for sharing your story with cyberspace!

LaShawna said...

I'm glad I found this blog! I just found out yesterday my son has a cleft lip and my emotions are all over the place. I try to understand how this could happen to me and why?? I'm glad to see I'm not alone.

Anonymous said...

I just found out at my 25week check up that my baby girls upper lip isn't visually. seen on ultra sound so I'm going in for a second ultra sound at 29 weeks scared to death i seem to be the only one worried this is a big deal to me no family history and two find children now one with it

Anonymous said...

I found out two weeks ago my baby boy has a cleft lift, not sure about cleft palate. I am really scared and hope your experience helps me go through the next months...
Thanks for sharing....

Unknown said...

I can't wait to read your blog! Being a Mom who is having a baby boy with a unilateral cleft, but also who has one myself, I have quite a bit of knowledge on what it means to live and grow up with a cleft. The concept of what it means to be a Mom to a child with one is totally foreign to me and a new scary territory. Experiencing the sadness, the fear, and the general overwhelming need to protect my child has all but consumed me since our 20 week scan 7 weeks ago. We met with the team of Doctors who will repair our sons cleft, but there is still no knowledge of the palate or what the months after his birth will be like. I hope that I can find my upcoming journey in your story and use your experience to help my own. Thank you for doing this, for us, and for your Son! Love from Chicago.

Lady Marcel said...

I don't really know what trigger me to stumble to your blog, it could have been one of those many times I Googled this week Unilateral lip.
But I'm so thankful and happy I found your story, Last Wednesday a week from today me and husband were excited to meet at 3:00 pm to head to our 20 week ultrasound to see our baby boy on the way. As I read your first blog, I couldn't help but feel at ease and I cant tell you how much you reminded me of myself a week ago. From the moment they told us the baby has a unilateral left cleft lip, I felt pretty much what you felt, very out of place and I had the feeling I was dreaming and soon I was going to wake up to know my baby was completely fine. As the days have gone by all I can do is research and research online, and all I could find was general medical information. What I really wanted to read was a personal story, I even wished I knew someone that unfortunately had to go thru this so that I could hear for myself that everything was going to be okay. I wanted someone to tell me that everything was going to be fine. I don't think you know the impact your story has made, I feel relieve to know that this is possible, that I'm not the only one and that people get thru it. As I see your sons pictures from before and after surgery all I can feel is hope, HOPE that my son will also be okay. I thank you so much for having the courage to share your story with so many details, I will definitely be reading more and more about you guys as the days go by. I'm still in a lost stage, but you have given me a different perspective and I thank you for that. Stumbling upon your blog has been the best thing that has happen to me this week.

Thanks again,
Lady Marcel.

Robin Reber said...

Hello, yesterday I too just found out my baby boy has a cleft lip. I went in for my 20 week ultrasound and they said he is measuring up to take but he wouldn't make his hands from his face so they asked for me to come back a week later so we went back at 21 weeks and that's when she went n got the doctor. When the doctor came in and started to s an his face is when I asked if something was wrong and that's when she dropped the huge ball on me and said she sees that he has a cleft lip. My world feel apart just like that. So I go back in 2 weeks for another ultrasound. I want to take all of this off of my baby but I can't I feel so helpless!!

Unknown said...

Today I went for a growth scan as im 35weeks pregnant and my son is a week behind in growth and just found out he has a cleft lip , after getting told that my whole body shut down! This is my 5th pregnancy as I've had all 4 kids in a row and I haven't had anything like this happen before. Just wanting to know does anyone know what age are the doctors allowed to do surgery to fix this? I do love my kids an my boy in my belly but this has honestly scared me to there any advice how this all goes about after bubs is born?

Unknown said...

Thank you for sharing your story. My wonderful friend and fellow military spouse was also born with a cleft lip. She has created a skin care line where a portion of the proceeds go to help cleft patients regain their smile. I would love to see her start up be successful because her story, like yours, has been so powerful. Do you know of any groups that we can share her campaign with? You can watch her video here:

Thank you again for sharing and I look forward to hearing from you.

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