Tag Archives: special needs

Confessions of a Cleft Palate Mama

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As an active blogger and Social Media participant, I choose to live my life out loud. In choosing to live my life in this manner, I open myself and my life up for comments and questions. Sometimes, these comments and questions hurt. Sometimes they are meant to cut. Other times, they are not meant to hurt but are instead posed with the best of intentions. The latter often catch me off guard. Such a situation occurred this past week. Instead of dashing off a quick and angry response, I called a friend and nearly ended up in tears as I described the situation to him. I let it sit over night as I thought about the best way to respond. Then I took to Twitter to vent about the situation. Once I took to Twitter, I realized I was not alone in my very justified reaction to the inquiry. Instead of a private response, I choose to handle this in a public manner. There are many other mothers of children with birth defects in this world and all of us battle the same thing deep down inside. All of us are consumed by guilt.

The birth of my second daughter at 35 weeks and 5 days occurred 42 hours after my first contraction. I pushed twice and her screams filled the air of the delivery room instantly as she emerged into my nurse’s waiting arms. Placed on my chest, she continued to scream and writhe about as most newborns do. At first glance, she appeared healthy. All fingers, all toes, you know, the important stuff. When she screamed however, her mouth gaped at the top where her palate should have been. I blinked and tried to check but blamed it on exhaustion. I tried to latch her onto my breast to nurse but it didn’t work. After several tries, on and off, her screaming, me almost in tears, we requested the Lactation Consultant.

The Lactation consultant came in, slipped on gloves, and swiped our 30 minute old daughter’s mouth. “She’s got a cleft.” A swarm of activity buzzed about our room and suddenly there I was, alone, in bed, freshly delivered and still numb from the epidural. No one to talk to, no one to explain to me what was going on. The thoughts started. I knew of a cleft. I knew it meant something was missing. But I didn’t know the cause. I didn’t know why. Then I thought. I thought some more. What had I done wrong?

Early in my pregnancy, I was unable to take prenatal vitamins because they induced severe nausea. Forced to choose between taking the vitamins or not eating, I chose to not take the vitamins. I even tried taking them at night but it was a no go. My depression from the birth of our first daughter also played into the decision to not discuss this nausea at length with my OB. Nausea continued well into the 6th month of my pregnancies. By the 6th month, though, I still was not taking my prenatals. In my depression delusional mind, I even wondered if it would truly affect my growing child’s well-being.

At six months pregnant, however, even if I HAD taken my prenatals, it wouldn’t have mattered. Most clefts form between 4-6 weeks, well before a woman is even aware of her pregnancy. Many clefts are even impossible to link to a specific cause. Our daughter’s specific cleft, a bilateral complete cleft of both hard and soft palate (meaning essentially, she had NO PALATE whatsover), was associated with a condition called Pierre Robin Sequence (pronounced Pea-air Roh-ban). Her jaw was also recessed, her tiny tongue was floppy, and her airway was narrow. In the 1920′s, PRS babies had a slim chance of survival. Today, however, the rate of survival is very high and surgery is available to correct these issues.

I was asked, several times, by several doctors, if I had taken my prenatal vitamins. I lied. Yes, I know I shouldn’t have lied. I should have been honest. But between depression, PTSD, and the guilt now whirring around in my head, rational behaviour escaped me. My partner didn’t even know I hadn’t taken my prenatals until I confessed while in labor with our son. (Hell of a time to confess, huh?)

Bottom line: I BLAMED MYSELF FOR MY DAUGHTER’S CLEFT.

Yes, rationally I know now I am not to blame. There is no family history of cleft. No associated genetic syndrome along with her PRS. It formed well before I could have done anything about it and even Mothers who take folic acid religiously still have a risk of giving birth to a child with a cleft. I know clefts are nearly impossible to see on a standard u/s unless you are looking for them specifically. Intellectually, rationally, I know all of this. and yet, the guilt consumes me. She grew inside me. She grew imperfectly. Logically I am to blame. If she is imperfect, there is something wrong with me. I failed my daughter before she was even born. I failed at motherhood a second time before I even held her. I FAILED.

Mothers of children with birth defects, with special needs know what I am talking about. We feel this every day. We fight like hell to not let this guilt eat at us. We fight against stigma, misinformation, judgment, and ignorance. We live with the stares, with the internal guilt which threatens to rip us apart every second of the day. We ferociously fight for our children so they may have a chance to live a normal life. A life of which they are completely worthy.

My daughter is nearly 6 years old now. She is beautiful. She is intelligent. She is determined, obstinate, and full of perseverance. She is happy. She is thriving. She is PERFECT. She is LOVED.

It doesn’t matter what I did or didn’t do all those years ago. I cannot go back in time to change anything which happened. Even if I could, I would not want to go back in time to do so. Because if I did, I wouldn’t have a daughter who has taught me more than anyone else in my life about the importance of hanging in there, fighting for even the simplest things (like speech, breathing, and eating), or that the most important thing in life is to be happy and keep others laughing right along with you.

The importance of seizing teachable moments

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Today, Janis over at Sneak a Peek at Me blogged about Teaching your Children about Differences. Sadly, this post is rooted in an experience she and her son were affected by today. During a trip to a local zoo, several children stopped and stared at her son. Their parents did not seize this opportunity to teach their children about differences. So she’s blogging about it to bring attention to this serious issue.

I agree with her.

As the mother of a special needs child, I have had to field questions about my own daughter. But my daughter’s issues are not clearly visible to those around us. So the challenges I face are different. It’s when my daughter speaks that we get questions. You see, she was born with a cleft palate, recessed jaw, and a floppy tongue (glossotopsis). This is officially known as Pierre Robin Sequence in her case because there are no other genetic syndromes along with her diagnosis. She’s had six surgeries, the first one at just 9 days old, the most recent one just over a year ago.

Her speech, while improved, is far from the normal expected speech. We have to constantly remind her to speak slowly. To enunciate. And yes, my four-year old KNOWS what the word enunciate means. And I know way more about speech therapy than I ever imagined I would when I started down Parenting Lane.

Our daughter tries her best. She does get frustrated because she’s terribly bright but more often than not, her ability to use her voice and words gets in the way of what she wants to share with us. She gets worn out and doesn’t want to try. Sometimes it’s hard for us to understand her. And sometimes it’s hard for others to understand her. She worries about being teased. And it happens. Someone asks her a question, they can’t understand the response, and voila. We get a question.

While it’s not the same as Janis’ situation, I understand the basic emotions. Immediately I worry they won’t understand or that they’ll make fun of her. The only place I’ve had to field an insensitive comment about her condition has been from a fellow kid in her special needs pre-k class. And I answered it appropriately. I seized it as a teachable moment by explaining to this child that issues with speech were what Charlotte needed help with because of the way she was born. But that she was trying her hardest at making her speech better each and every day. The child nodded and went back to his coloring. Charlotte shot me a grin (she had overheard the child’s question) and went back to her coloring as well.

It is important to us Charlotte understand how she was born. That she know we are not ashamed of it and she can do whatever she wants to do with her life. We celebrate the smallest of achievements – like this year – on her fourth birthday? She blew out the candles all by herself for the first time EVER. The first time she blew up a balloon? Squeals! Bubbles? Lots of squeals!

She did not start talking until she was nearly two years old, maybe even older. We talk with her a lot about her speech and why she has problems with it. She openly shares with us when she’s frustrated with it and we work to heal those frustrations together. She’ll be starting a regular pre-k program later this summer and is very worried about other kids making fun of her. I’ve been making sure to sit down with her to talk about her options if that happens. She’s getting very good at asking questions and opening up with us about her worries and concerns. I’m happy to see this development because it means I’ve done my job right in being open with her about what’s going on in her life. I know there are more battles down the road. Right now though, I’m building the base of a very strong building for my daughter. I want her to stand tall no matter what comes her way. I want her to know she’s perfectly okay the way she is because GOD made her that way. That we love her no matter what.

And if we see someone different out in public and one of the kids say something, we are down at their level immediately, explaining to them that GOD makes everyone different, that some of us may need extra help but that’s okay. We tell them we should love everyone the same, be polite to everyone, and that pointing and staring is not okay. We tell them that people who are different are still people and want to be treated with the same compassion, respect, and dignity as everyone else. So far the kids are doing great with this. I hope this is a lesson they carry with them for life and infuse into their own children’s lives. Because acceptance and compassion are half the battle in being the bigger person.