To the Mama Who Just Learned Her Baby has Cleft Palate | allmomdoes

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To the Mama Who Just Learned Her Baby has Cleft Palate
Thursday's Mom Encouragement
6 1

There are so many people that say pregnancy is a blessing, but what if it’s not? Sometimes we forget that not everyone has an easy pregnancy.

I had no idea what to do, or what to expect. I pretty much winged it at first.  Seriously, I looked on Yelp to find a doctor.  Then, when I finally started to really feel pregnant, our whole idea of what pregnancy was changed.

We found out through ultrasound that our baby had a cleft palate.

For the record, a cleft lip and/or palate is one of the most common birth defects in the world. 1 in 700 births WORLD WIDE will have a cleft.  You've likely encountered people that had a cleft and you didn't even know it.

So know this, mama to be.

1. You are not alone.

I sure felt alone though, as I’m sure you do. Some people will try to console you, they'll say things like “God stitches us in the womb, it’s still possible he will fix this.” Or “It’s so treatable.” They mean well, but they don’t really understand.  The only people who do are others who have traveled here before.

While I was at the doctor one day, waiting with my daughter for my husband, another husband was waiting on his wife with his child. The little boy, maybe six months old, had a very familiar NAM molding device (it’s like a really intense dental retainer that is taped on their face). I, rather bluntly, asked if the child had a cleft. The poor startled father nodded, and I watched him prepare for the inevitable questions. Then I pointed at my unruly child and said, “she has a cleft too.”

He stared. There was no way this beautiful little girl had gone through what his son was going through. I showed him photos that I keep in my phone for just such an occasion. The relief he had on his face, knowing someone else had journeyed this path, was painfully clear. If I can tell you one thing, KNOW that you are not alone.

2. You Did Nothing Wrong.

It’s inevitable to ask yourself, and God, why? What did you do wrong? The answer is nothing. The doctors chronicled my history and my habits. Then they did the same to my husband. They will also suggest that it’s possible there are other things wrong - which may be true - but usually turn out to be unfounded. There is NO evidence that a cleft is directly related to anything in particular, or any other defect. Some will suggest diet, others family history, others personal habits. There is no definitive medical conclusion of WHAT causes a cleft. They cannot tell you why, and you don’t need to know that answer. Just know that whatever it was, it is not your fault (or your husband's).

3. Be Prepared.

I prayed. I hoped. I cried. Like, a LOT. I educated myself on medical treatments and found the BEST children’s surgeon in Seattle.  I researched every possible form of cleft, particularly worst-case scenarios. I wanted to know what she might look like so that when I saw her first, it would be with love.

I wrote a letter to all of my family and friends. I asked them to Google worst-case scenarios on their own. The last thing I wanted was to look at someone I needed support from, only to find shock or disgust. You may still feel sad when you first realize that God did not fix her in the womb, but the first time you see that ear to ear grin, you’ll realize how blessed you are. My daughters cleft formed a perfect heart, right where her mouth should be.  I decided that was God’s way of letting us see how big her heart was right from the start.

4.  It’s Ok to Use Formula.

I know. There is a HUGE battle for breast is best. The thing is, your baby will not be able to latch. Period. Even if their cleft is not as bad on the lip, with a cleft in their palate they are unable to suck. That hole in the roof of their mouth leads directly to their nasal cavity.  Needless to say, feeding is a challenge.

A baby eats every 2-4 hours. When you can’t feed them naturally, you have to pump or find alternatives. Now, I pumped. For a whole 4 months. She would eat from a specialized bottle the hospital provided, then I would pump. I’d get an hour after that if I was lucky for anything else, before we’d start all over again. My little girl was hungry. I simply could not keep up. I broke down in tears, crying about how I failed as a mom, how I failed as a woman. My husband gently reminded me I did everything my body could. It was time to use formula. She didn’t lack in food and I got a little more peace.

5. Take as Many Photos as Possible.

There was a heartbreaking day at the hospital. It was her last appointment before her first surgery (there will be several).  Another mommy with her nine year old approached, asking if her daughter could look at mine. She pointed at the NAM molding device, explaining to her child what she had once gone through. The little girl stared blankly. She didn’t understand at all. The mom said she had very few photos of her daughter before the first surgery. She was very sad about it, and admitted she had felt ashamed.  And I felt relieved that I had made a commitment to make sure she had a record of her journey.

This challenge is actually for you, not your child. My daughter has no memory of either of her first two surgeries, but I do. I have very vivid memories of fear, anxiety and shame. After her first surgery, I caught myself explaining her scar to strangers- strangers who had not even noticed.  I felt like I had to explain before they judged.

Then I realized it was me doing the judging.

It’s ok to feel afraid, but don’t let it rule you. This is not an easy journey, but you can do this. There great news is, not only has He gone before, but so have many other mommies and daddies.

Go back to number 1.

Read it again.

You are not alone.

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  • Erin Neal is a mother and filmmaker in Seattle, WA. When she is not chasing around her tiny human, she is pursuing her next film project with her husband and their company Faith vs Fate Productions. You can follow her on Twitter at @EnWrites or check out her many film clients at www.faithvsfateproductions.com.

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  1. Ray posted on 02/15/2016 09:47 PM
    THANK YOU!! What a great post! I am a parent of a son who is now 10 with a bilateral cleft lip/palate. We were among the first few at our hospital to use the NAM. Thank you for putting this out there and I wish I could have read something like this when I was pregnant and found out. Thank you for sharing.
    1. ErinN posted on 02/16/2016 04:19 PM
      @Ray The NAM was quite the journey. I turned a clam-shell wipe dispenser into a medical container, prepping tape and bands in advance. I'm grateful to share!
  2. Emily Diaz posted on 08/07/2016 05:09 PM
    Thank you so much for sharing ur story . I revently found out my baby girl will have cleft lips im feel so down n honeslty im scared of how she will look... But this story made me feel a little stronger for when my baby comes out i will be as strong as you
    1. ErinN posted on 02/11/2017 02:20 PM
      @Emily Diaz Your daughter will be beautiful. I've met lots of littles with the best smiles. Somehow, maybe because the universe and god know they'll need it, they get a special tenacity and sense of humor too. Have courage. Your little will be just lovely.
  3. Katie posted on 09/14/2016 01:09 PM
    I wish I could have found this a year ago! My fourth daughter was born with a bilateral cleft lip with two holes in her palate. Clefts ran in my husbands family but we had three daughters with no cleft so it was shocking and heartbreaking (which only those who have children with this can fully understand) when I gave birth to my fourth little angel. Needless to say, I had to figure a lot of things out on my own and didn't even think to search pinterest for cleft lip/palate. Thank you for your post!
    1. ErinN posted on 02/11/2017 02:23 PM
      @Katie Better late than never. I still need reminders from time to time. My little turns four next month and I sometimes still have to remind myself of her journey. What I've discovered more than anything is to speak up for other parents when I meet them. I've met parents several times struggling to manage. I share my photos, my story and reassure them everything will be ok. <3 and blessings!
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