Coping with the Cleft Diagnosis
Have you just found out about your baby’s cleft? Feeling overwhelmed? Well, you’ve come to the right place!
Some moms find out about their baby’s cleft during a routine ultrasound, and others don’t find out until birth. No matter when you find out, the news often comes as a total shock. Here, we share some words of wisdom from fellow cleft parents as they reflect back on coping with the cleft diagnosis and navigating through pregnancy. And across all of the advice, one message comes through loud and clear: It’s going to be OK!!
Parent Coping Tip #1: Breathe. Allow yourself to go through the emotions, but enjoy your pregnancy!
Allow yourself to go through all of the emotions you are feeling. Sadness, anger, guilt, jealousy, frustration… all of it! It is perfectly normal and healthy to go through the full spectrum, and once you come to a place of a bit more peace, THEN you can start researching teams, presurgical techniques, bottles and all that other good stuff (all of which can be found here on Cleftopedia)!
Don’t let the diagnosis take away from the joy of your incredible pregnancy! You are going to love that little baby the moment you lay eyes on them.
Do not blame yourself.
Breathe. If it’s a surprise cleft take time to process it. It took me time to accept our baby’s cleft.
It can be very emotional finding out about any diagnosis regarding your child and it is understandable to be nervous (or anything). Enjoy taking monthly belly shots, preparing the baby room, baby showers… etc. Let yourself feel all of the good that can come with pregnancy.
Know that you were chosen to be the perfect mommy for your baby. Don’t compare your baby to other babies (cleft or not). Try to enjoy your pregnancy as hard as that sounds – it flies by so fast!
Your baby picked you to be their mom for a reason. You’re stronger than you realize and so is your baby. The fear you feel during pregnancy goes away and instantly turns to love as soon as you lay your eyes on that sweet face.
Parent Coping Tip #2: Educate yourself (but DON’T Google)!
What’s one of the first things experienced cleft parents say to someone who has just found out their baby has a cleft? DON’T GOOGLE! Research is an excellent way to prepare for and play an active role in your child’s cleft care, so make sure you always turn to trusted resources. Here at Cleftopedia, we provide tried and true, parent-to-parent advice to help both new and experienced cleft parents. We also highly recommend the Cleft Palate Foundation and AmeriFace.
Do all the research you can! Learn about clefts and get comfortable with wording on treatments, types of clefts, parts of the mouth and nose, surgeries needed etc. so you won’t be overwhelmed when you go to meet with surgical teams. Having an idea of what their “cleft lingo” means will greatly help with not feeling defeated with something so complicated and you will feel way more confident in choosing your surgeon!! Also- it’s totally ok to cry and be mad. Yes, surgeries help put things back together but it is completely valid to be sad over not getting to be “normal”.
Don’t be afraid to ask questions of actual medical professionals. Facts might be scary, but the things you google or build up in your own head are way scarier! Also know that your baby will be beautiful to you, and that people will take cues from you on how to react or approach your child. Try to stay positive and educate yourself so that you can calmly educate others!
Stay away from Google for sure! All it will do is make your mind race and you will read stories and put yourself in that situation! Realize this is going to be hard but not impossible – look at all of the incredible, strong, supportive moms out there. YOU ARE NOT ALONE! And enjoy it all: the cleft kisses, first giggles, how they eat, talk baby talk… it is a beautiful thing because in just a short time their cleft will be gone so take it ALL in!
Educate yourself but stay open minded. What works for 100 cleft babies, may be different than what works for yours and that is OK!
Carefully consider where you will deliver (my local hospital most likely would have sent my son to the city simply because he has a cleft, so I decided to deliver there instead of risking being split up). Look for a pediatrician who is comfortable with clefting. Figure out your insurance beforehand, if you can (I couldn’t and it was a nightmare at first).
Educate yourself little by little rather than overwhelming yourself all at once. Try not to focus on the scary things (like any syndromes that could be related), and try not to focus on “what caused it? Was it something I did?!”
Do. Not. Google! My girl’s cleft palate was a complete surprise and we didn’t know until about 3 hours after birth. I googled it as soon as I found out and of course I began thinking the worst of the worst. Wait until you talk to the pediatrician on duty. I get that you want to be prepared, but savor the moment. Love that baby and know that it will all be ok.
Educate yourself!! It really help me to know what we were facing made it easier for me when it was time for my LO to arrive! And if you can, get your husband educated too. My hubby did not educate himself and he was devastated when she arrived.
Whether you find out at an ultrasound or at birth, get into the habit of writing down everything they say to you during appointments. They give you so much information and it’s hard to make sense of it all until you become more educated about clefts. Having notes to refer back to after the appointment is over is helpful. Write down any questions you think of later, and bring the list with you to the next appointment. I still do this, and it’s really come in handy.
If you know your babe will be born with a cleft, find out as much as you can about clefts ahead of time. Read everything. Ask people anything. Depending on where you are located, your doctor and/or nurses might not have much experience with cleft-affected babies. Despite what doctors might say, it is very difficult to tell whether or not there is palate involvement before birth. You *might* be the most educated person in the room.
Parent Coping Tip #3: Establish a support system.
Having a strong support system can make all the difference in the world. In addition to friends and family, many parents find that being part of a cleft support group is an invaluable resource. To connect with other parents that are also going through the same things as you, we highly recommend joining the Facebook group, Cleft Mom Support.
I wish I had joined a support group earlier in my pregnancy- a lot of my fears and assumptions would have been calmed!
Support, support, support. Don’t be afraid to ask for help from family/friends. Online support. Don’t be afraid to ask your team questions and get to know them.
Julie M. Cwir’s book “I Wish I’d Known… How Much I’d Love You” (available in the Cleftopedia shop) has amazing letters of advice/encouragement and stories written by parents about their child’s cleft journey. It’s good to have family/friends read the stories too so they can better understand what you’ll be going through.
Reach out to a cleft charity for written information, then share it with those close to you. By learning together you’ll strengthen your support network and give loved ones an invitation to share the journey ahead.
Knowledge is power in a situation like this. The more I researched and reached out to other cleft moms, the better I felt.
To me, the cleft support group I am part of was inspirational. It gave me the strength to be a cleft strong super hero mommy. I started to trust that it would all be truly ok because of the amazing love stories shared, and it was!
Parent Coping Tip #4: Remember – Your baby is perfect!
We parents love our babies unconditionally, cleft or not. Sometimes it can be easy to get distracted by all of the “what if’s” or we can become obsessed with pinpointing the exact details of the cleft (how wide, complete or incomplete, is the palate involved, etc), but rest assured, you will fall in love with your baby regardless of any of that. The anxiety of the unknown leading up to birth can be difficult, but once they’re here it somehow melts away, and most parents agree that the worrying they did during pregnancy was unnecessary!
Know that you will truly love your baby’s wide smile with every fiber of your being. You will see lip repair day as an opportunity but also a day of loss. I still vividly remember the way I kissed my son’s cleft lip – three little kisses: Left side, right side, big smushy kiss. I’ll always treasure those moments and want to do it just one more time!
While your baby may not be the baby you expected, they are wholly and perfectly themselves.
Once you say hi to your baby for the first time, then you fall in love. It doesn’t matter in the end. In fact, when my son had his lip repaired, I missed his old smile. These kids are such an inspiration. What they go through and still manage to be happy with life, sure puts your life in perspective. These kids are a pure gift and such a great lesson. I’m a better man because of it.
I think my lightbulb moment was reading, “This is the same baby you have been loving all this time. That baby hasn’t changed. Your perception has changed. All you have to do is keep loving that baby, just like you have all along.” I think it’s so easy to get overwhelmed with worrying about appointments, and sonograms, and bottles. Just stop!! And trust that you are doing all the right things!!
Don’t stress! It will all be okay! Your baby will be perfect no matter what! Don’t worry what other people are going to say/think because who cares? That’s YOUR baby! And they are perfect!!!
Allow yourself to grieve, allow yourself the tears. Try not to wallow in the guilt every mother feels, thinking your body failed your baby. Easier said than done, but don’t spend so much time worrying. You worry you may feel differently towards your cleft baby, you worry that you may feel pangs of doubt or apprehension. I can only speak for myself, but my primal mommy instinct kicked in immediately. I saw her face, fell head over heels in love, a love I never knew could exist, a love so powerful and consuming, I didn’t know I could even feel such an emotion. Right then and there, I designated myself her advocate, her protector and her number one fan. All those months or weeks of worry melt away. That beautiful wide smile takes over and the last however many months you spent stressing just disappeared.
Don’t immerse into the negatives, picturing the worst that can be or go on the websites that just talk about how horrific this is, which it isn’t. You will fall in love with your baby the second you meet and all the negatives will vanish. So don’t stress yourself during pregnancy.
While I was afraid of surgeries, I was more afraid of the social impact. I was afraid that I would dislike or be ashamed of her cleft, and that thought hurt me so much because I didn’t want to be ashamed of any part of my precious newborn. When she came, I wasn’t ashamed of her cleft, and I didn’t dislike her face. You really do love your newborn, unconditionally!
Remember you are not having a cleft, you are having a baby!
Be as confident and open about your child’s cleft as you want them to be when they are older.