To the mama who just received her child’s cleft diagnosis

“Your baby has a cleft lip and palate” something no mama wants to hear. That very second, all the emotions one can feel hit you like a ton of bricks. You are upset, scared, mad, confused… The excitement of your pregnancy has quickly been taken from you. You feel so alone, like no one can relate. You feel horrible for being upset because it’s still your baby. Wondering how could this have happened? What did I do wrong?

You have no idea what to expect or what this means for your baby. Googling like crazy about cleft lip and palate. Searching for support groups on Facebook. Searching “#cleftlip” on Instagram trying to find ANYONE that can relate to you.

I’ve been there… exactly where you are.

Know this mama.

  1. You did nothing wrong.

I know you are asking yourself “Why? What did I do wrong?” Nothing, you did nothing wrong. It’s extremely rare that the mother is at fault.

Some people will tell you it’s your fault. That you didn’t take enough prenatal vitamins or that it was caused because of the environment you were in while pregnant. DO NOT LISTEN TO THEM. Cleft lip and/or palate are almost always genetic or isolated. There’s nothing you could have done to prevent this from happening.

So please mama, stop blaming yourself.

  1. You are not alone.

It may seem like you are alone in this, like no one knows what you are going through. You are probably right. No one you know has gone through this; they don’t know what you are going through.

But there are so many families going through the same thing. There is a mama that just found out about her child’s diagnosis too; she is also struggling. Find support groups on Facebook. “Cleft Mom Support” is a wonderful support page on Facebook. Find other cleft mamas on Instagram; it’s okay to reach out to them.

Some many moms message me almost daily asking questions or asking for advice. It’s okay, we don’t mind.

  1. Do your research. Be as prepared as you can be.

Your baby will most likely not be able to breastfeed if he/she has a cleft palate. This is hard to handle for most moms. I know it was for me. I was so excited to breastfeed and have that bond every mom talks about. But unfortunately, it’s almost impossible for babies with a cleft palate because they don’t have suction. Some babies with no palate involvement and a “smaller” cleft lip are able to breastfeed, which is wonderful. But it’s okay if your baby can’t, again you are not alone.

Your baby will need a special bottles that don’t require suction. There are a few different brands of bottles that you can use. Dr. Brown’s specialty feeding bottles, Pigeon bottles, SpecialNeeds feeder by Medela or Haberman bottles all work for babies with cleft lip and/or palate. I made sure to have at least one of each bottle just in case. You don’t have to; this was a personal preference for me.

Your baby will most likely not be able to use a pacifier either. These are things to keep in mind while doing your baby registry.

Cleft babies spit up a lot. Spit rags and bibs are a must. It’s also a good idea to have a crib wedge to keep their mattress propped up. This helps with congestion as well.

It may not feel like you can prepare much but you can! It’ll make it so much easier for y’all when your baby makes their arrival.

*I have put together an entire shopping list to help prepare for your cleft baby. Visit my Amazon Storefront at www.amazon.com/shop/thestorybehindtwosmiles to view this list.

  1. Enjoy your babies cleft. Take tons of pictures.

It may not seem like it now but you will miss their little cleft so much. While I am absolutely in love with my son’s forever smile, I still miss his cleft every day.

Almost all cleft babies will have the Dynacleft tape on their face. This is on 24/7, other than when you are changing out the tape. Some babies will have the NAM device as well. This is also supposed to be in 24/7 other than when you take it out to clean it. Take pictures of your little one with and without the tape/NAM.

There will not be many moments that your baby won’t have this tape on and/or the NAM in. Cherish the moments with their bare face. YOU WILL MISS IT.

I cannot express this enough. Months after their lip repair surgery you will find yourself looking back at all these pictures, missing their little cleft. Because this was all you knew for so long.

  1. It is okay to be upset. It is okay to not talk about it with others if you don’t want to.

Many will try to console you. “It’s an easy fix” or “they can do great work these days, people won’t even know he/she had a cleft lip“.

These comments aren’t comforting, but they don’t understand that. They aren’t in your place. They think they are helping. To be honest, they don’t know what to say to you. They are trying their best to be there for you. They are trying to not say something that will hurt your feelings.

It’s okay to ask them to stop or to tell them that it’s upsetting you. It’s okay to express your feelings. But it’s also okay not too. Don’t feel pressured to talk about it. I didn’t talk about it for the first month and half after we found out about my son’s diagnosis. When family tried to bring it up to me I would shut down. I avoided the whole conversation for so long.

It takes time to come to terms with this.

  1. Stay strong for your baby, for your spouse and for yourself.

I am not going to sugarcoat it to you. It’s hard. It’s hard to see your newborn baby struggle to eat. It’s hard to learn how to syringe feed because your baby cannot take a bottle at first. It’s hard to put tape on your sweet baby’s face every single day. It’s hard to continue with the NAM device when it causes your innocent baby pain. It’s hard to ignore the stares your baby gets in public. It’s hard to hear rude comments people say. It’s hard to send your baby into the operating room multiple times. It’s hard to stay strong in the waiting room. It’s hard to watch your baby in pain during recovery. It’s hard even months after their surgery. It’s hard to keep it together when all you want to do it break down.

It’s hard mama.

It’s so easy to lose yourself. Don’t, your baby and partner needs you more than you know. You are their strength. They depend on you just as much as you depend on them.

It is okay to breakdown and cry. Just make sure you pick yourself up afterwards. They need you.

Finding out that your baby has a cleft lip and/or palate is extremely hard to handle. Everyone copes differently. Give yourself time to come to grips with this. It won’t happen overnight. It may not happen in a week or even a month. But it will happen; you will get over this feeling. The excitement will come back.

I promise.

Give yourself time.

*If you ever need to talk to someone; vent, cry, complain, ask questions, etc. do not hesitate to message me. I am here for every single one of you.

4 thoughts on “To the mama who just received her child’s cleft diagnosis”

  1. Thanks for writing that. Everything you wrote is so true and totally hits home. I wish I found that when I initially found out the news. My son was born on September 2 and I’m so in love.

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  2. Thank you for this. I wish I had seen something like this back in February when we got the diagnosis during our 20 week ultrasound. “Your baby has a defect” the doctor said plainly, and our lives changed forever. Fast forward through the tears, fears, sleepless nights, google searches, pictures, questions, to June 29 at 12:12am, when this beautiful, perfect, strong little boy was put in my arms for the first time. The fears and everything else still there, but the love is so overwhelming that it makes everything ok. And that smile. That giant, gummy smile that lights up his entire face makes my heart melt every single time. 2.5 months into this cleft journey and scared for all that lies ahead, but thankful for mamas like you who have paved the way and are there for us. 💖

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  3. I did not know I was pregnant with twins until I was 30.5 weeks. Then at 36 weeks baby A was born with a cleft lip and palate. I felt and still feel guilty. Thanks for writing this!

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  4. All of these is true. I remembered everything i’ve been throught when i found out that my baby has a cleft lip and palate. It was a very painful feeling knowing that you did everything that you can to take care of your little on. But i overcome that feeling. I am happy with my baby and i love her so much. I know god has a purpose why he gave me a daughter like her. I just always pray that she’ll have a better future.

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