Welcome to the club! A cleft diagnosis is probably not something you ever thought you would receive. But here we are! It is my hope that these 10 tips found below can help you after just receiving a cleft diagnosis. There is so much about children in general that you can’t control, and life may feel even more out of control with a new cleft diagnosis. However, having access to information, specialty items, and surrounding yourself with a strong community are great ways to help ground you during this time. Scroll all the way to the bottom to find some helpful podcasts/videos/websites and overall resources!
This post will be an action filled post, because that is what I felt like I needed but couldn’t find when we got out diagnosis. I needed to know all the things. So here are all the things without a late night Google rabbit hole, like I did. I am a researcher by hobby and so when I went to our first cleft team meeting, I wanted to make sure I was as prepared as possible. My hope is to share some general information, and just be a resource for you. I‘m only a message away on Instagram !
I will give you some places to reach out for support, share some immediate steps that you can do today, and some things that I wish I did differently after our diagnosis. I’ll also be sharing some celebrations of things that went well after our cleft diagnosis!
The focus of this post is from cleft diagnosis up until birth! Stay tuned for my story of birth and then an overview of birth through the first surgery. I also have an essential registry list for cleft moms, a guide to telling your other children, and so much more planned. I’m feeling so grateful to share what has helped us. I feel like our cleft journey has been broken up into these major milestones and I’m excited to take y’all along with us!
I’m sure there are so many feelings swirling around in your head. First, I want you to realize that it is okay to have whatever feelings you have. No one wants to find out about any abnormalities with their children, but know that you are about to be surrounded by the best community who will hold you through this whole process. You are not alone. Also, I want to share I am not a doctor and am not giving advice about what you should do on your journey. I am just sharing what worked or didn’t work for us on our journey to hopefully make you feel a little bit less alone.
One of the other things that really helped my was having a gratitude practice. So much so that I wrote my own gratitude journal and you can purchase it here on Amazon!
Not a cleft mom, but received a different diagnosis during your pregnancy?
3% of all pregnancies result in a child with a birth difference. That doesn’t seem like a large percentage, but the World Health Organization estimates that globally an estimated 8 million newborns are born with a birth difference (some may say defect, but I try not to use that word) every year. The CDC has a lot of information about the diagnosis of general birth defects differences on this website. It is my hope that these tips can also partially apply to you as well! Since the cleft facebook group might not apply, I encourage you to search for other support groups for your particular diagnosis.
So, close your eyes, and take a nice and deep breath. Maybe a few. Ok, now open your eyes (so you can read this) and picture me reaching out my hand to take yours and to guide you this this special, roller coaster of a journey. I’m still very much in the thick of it as I’m writing this, so we can do it together. I need the support just as much as you do. But one thing I know for sure, we will not be alone in this. And we were perfectly created to be the parents to our unique children!
10 Things to Remember Today:
1. You are Not Alone. Remember, many moms have been in the situation you are in right now. We are here for you. If you haven’t already, join the Cleft Mom group on Facebook. There are lots of great cleft Mom groups on Facebook, this one is my particular favorite group. These mamas have all been in your situation and they are ready to help! Personally, we were gifted books, bottles, discs, and a Cozeecoo (a specialty swaddle) from other mamas on that group! Not a day goes by that people aren’t lifting each other up, sharing victories and helping each other! I can’t wait to pass on our cleft supplies when we don’t need them anymore. There are also a ton of great instagram moms sharing their journey! You can search “cleft” on instagram to find us! I will also compile a list of instagram accounts who want to be shared in another post.
2. You did nothing wrong. Try not to obsess and think about why this happened. I sometimes catch myself still questioning why, but I know that it was nothing I did wrong. It was nothing you ate, or did or didn’t do! My doctor reminded me that they have. many clefts in twins where one twin will be cleft affected and the other twin isn’t. So same mom, same environment, but different cleft outcomes. That brought me peace.
3. You will feed with love! Yes, your feeding journey may look different than you expected, or hoped, but know that you will give your baby the nutrients they need to thrive and grow, however that may be. There are also cleft pumping facebook groups. I was able to give her colostrum through a spoon, she drank donor milk from the hospital until my milk came in. I pumped for a while until I decided that being exclusively formula fed was better for my mental health. Brianna has done great on formula with minimal spitting up. (We have been using Gentlease formula)
4.Knowledge is Power! Don’t overwhelm yourself, but I found the best resource for me was reaching out to my cleft team. I will also include some awesome resources below for newly diagnoses cleft families that was helpful for me. Each cleft team and situation is so different so try not to future trip about things that you see other kids going through. Lots of the information I came across on the internet was different from what our cleft team said. I stressed myself out about a lot of things that never happened with our particular case. So while knowledge is power, try to also not stress over everything you read/assume may happen.
5. Add some cleft essentials to your registry/gift list. When we shared with our close family about our diagnosis a lot of them asked what they could do to support us in this time. It was helpful to have a few items picked out that they could purchase to help our transition to a family of 5! More of my suggestions for a cleft registry items coming in a future post!
6. Advocating for your child starts now. We pursued genetic testing, a fetal MRI and an amniocentesis in order to collect as much information to help her team of doctors. You can interview different cleft teams. You don’t have to go to the cleft team that is originally recommended to you. We changed OBGYNs and hospitals to deliver at because everyone involved thought it was a safer choice for our baby. And I’m so thankful I did. I’ll be sharing more about this, but just because your child will be cleft affected shouldn’t change what birth plan you want for yourself!
7. Decide who you want to tell and when! This is a whole topic in itself but take some time and decide what information you want to share and with who! We kept hearing “we just have to wait until she gets here” a lot from our doctors. So, we made the choice to inform our close family and friends so they could be praying for us and for her. Don’t feel any pressure to share anything if it isn’t your timing.
8. The rest of your pregnancy can be similar to a non cleft affected pregnancy. We had extra ultrasounds and a few virtual cleft meetings to meet the team and prepare for her birth, but besides that Brianna’s pregnancy was the same as my other two pregnancies. I was thankful for all the extra appointments because it gave me more times to see her in the womb!
9. Enjoy this time, but take everything one step at a time-I know it can be hard after receiving a surprise diagnosis. If you are lucky enough to know about the cleft before delivery that is such a blessing because it gives you time to process and prepare. Often times, cleft palates are very difficult to diagnose until birth, so if that is your case we are here for you! Don’t forget to care for yourself. Rest when you can and ask for help when needed. Focus on the present and the small victories. Try to take everything day by day and not future trip.
10. Whats best for all kids, is usually best for your cleft affected child, and you will have a team of people guiding you every step of the way. So many questions that I had our cleft teams answer was “well what did you do with your other children?” Which was a helpful perspective shift for us. Our cleft affected kiddos don’t know any different, this is just the anatomy that they were born with. They are incredible resilient. I kept asking my cleft team about things way in the future: about bullying, speech, etc and they would address my fears but then also say, “we will get through that if it becomes a concern.” I really appreciated having a cleft team to guide us through this newborn stage. We had some health scares with both other kids during the newborn stage and felt very alone, lost and didn’t know who would help us. Having a team we can message on mychart for every little thing is such a gift.
Some Helpful Resources for Cleft Research!
The following websites were helpful when we were first learning about our diagnosis. However, each team is so different with their approach so it is helpful to reach out to your cleft team and ask questions that you have!
A lengthy (but super informative) Youtube video overview of cleft treatment from our Cleft team. Includes how they repair the lip. Warning: Contains some medically graphic images of surgery.
Introduction to Cleft & Craniofacial Conditions from American Cleft Palate Craniofacial Association
A free cleft lip and palate guide from Nationwide Children’s!
I try to document and share our journey to help others on Instagram, so please reach out and send me a message! You can find other members of the cleft community by searching #cleft in the search bar on Instagram! You can learn more about our family on my about me page!
Podcasts and Shows
Podcasts to Listen to:
Check out this Podcast from How Stuff Works, called: “How Cleft Lips and Palates Work”
Smile Strong is a great Podcast by my friend, Alyssa. This episode is great! She shares a lot of cleft related resources on her Instagram!
Cleft Representation on Disney+
If you have Disney+ check out the episode, “Cleft Hood” on the show Firebuds. Read about the real life inspiration of “Cleft Hood” here.
We are so grateful for everyone in the cleft community and all that we have learned over the last year. We will always be learning and growing, but so glad we can do it together! 🙂 Also, I am not a medical doctor and none of the information on the page is intended for medical advice. I am just a cleft mom who needed all the resources after her diagnosis and wished I could find some more resources, so I created some!
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