Tips every new cleft parent needs to know

Being the parent of a child that was born with a cleft lip and/or palate presents its own set of challenges, but there are definitely some tips that can help make things a little easier for you and your new baby.

When my son was unexpectedly born with a bilateral cleft lip and palate, I was shocked. There was no history in our family and I had several uneventful ultrasounds, so we had no expectations of there being anything wrong.

I was completely out of my league. I thought since Wyatt was my third child, that I had this motherhood thing down, but everything was different with my cleft cutie.

No breastfeeding, exclusively pumping, no pacifiers, special bottles, lots of spit-up, taping his face, getting the NAM, and lots and lots of doctors’ appointments. It can all seem overwhelming but I assure you, it gets easier over time. For me, the first year was the hardest, but after that, it was no different than caring for any other one-year-old.

Everyone’s experience will be different of course based on the severity of the cleft, but you will get through it. Just take things one day at a time.

For me, I didn’t want to know any information about the future. I just wanted to know the here and now of everything. I didn’t research anything or reach out to anyone for support. My husband, on the other hand, used Dr.Google for everything and was always full of information.

The one time I googled stuff it upset me, so I just stayed away from it. I do wish though that I would have reached out for support from other cleft parents sooner. That would have been an amazing resource!

Here are some things I’ve learned along the way that helped me out and I hope they can help you out too!

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Tips and tricks for the new cleft parent

Join a Facebook support group. This is so important! You will get help from an amazing group of parents and you will learn so much. While scrolling through posts it is important to remember that every case is different, so just because another child had had X amount of surgeries, does not mean that your baby will need the same amount.

Join an exclusively pumping group on Facebook. If you plan on pumping, search Facebook for their exclusively pumping groups. The information and help you’ll get from them is invaluable!

I was given incorrect information from my lactation consultant at the hospital and by the time I found this group I barely had a milk supply. I wish I would have found them sooner!

It’s really important to keep in mind that most lactation consultants are not trained for exclusively pumping, so they may unintentionally give you information that may hurt your supply.

Try to find a Pediatrician who has cleft experience. You can try calling around and asking but I found a great resource was my local cleft support group on Facebook. Search your city, or the nearest big city then add the word cleft and see if anything comes up.

Those moms will know the best Pediatricians to see! The problem that I found was that my Pediatrician doesn’t know a whole lot about clefts. So there was a lot of unintentional bad information given out.

Unfortunately, the doctor that was recommended locally was not in my medical group so we weren’t able to see him. Having a knowledgeable Pediatrician would have made the first year a lot easier.

There are several different special needs bottles that you can choose from. Personally, I have only used the Medela Haberman and Dr.Browns special needs feeder. I loved both of these.

The Haberman is what we used until Wyatt was three months old. With this bottle, you squeeze the nipple while the baby is eating to get the milk to flow out.

DO NOT rely on the baby getting the milk out on his own. When my little guy was about a week old I noticed he could get the milk out without me squeezing and I thought this was an amazing accomplishment since he had no suction. But, it was actually really bad for him. He was burning more calories trying to eat and he started losing weight instead of gaining.

***If you decide to purchase just the Haberman nipples that are sold separately, please note that they DO NOT come with the membrane that makes the bottle work!

These bottles are expensive so to save money you can just buy one full set and then a couple of the nipples and then just wash the membrane all the time.

Dr.Brown’s specialty feeder is also great. This bottle differs from their regular bottle because it includes the little blue discs. These are essential to making this work for a cleft.

The blue discs are not sold separately! You need to buy the whole bottle and the only place I was able to find them was on Amazon.

If you are looking for extra discs, you can ask in your cleft support groups if anyone has any they are done with. Everyone usually posts them free once they are off the bottle.

Keep in mind you will most likely need a larger nipple size than you expect. So don’t stock up on a bunch of size 1’s. Most likely you’ll start with a 2 and quickly move to a 3.

Feedings shouldn’t last longer than 20 minutes. If it goes on longer than that, your baby will be burning more calories trying to eat and will start losing weight. This is information straight from my feeding specialist. Keep in mind I’m not a doctor so always check with yours if you have any questions.

Contact your feeding specialist if you have any feeding problems. From my experience, there was usually a really easy fix, but the solutions were things I wouldn’t have thought of on my own.

Finding a sippy cup for your cleft cutie can be extremely frustrating! I probably wasted about $100 trying out different cups that would work for my son. He got really frustrated with them because he had no suction and he could never get anything to come out.

I FINALLY found this OXO cup on Amazon! Baby can bite down on it and it will release the fluid. It seems to only be sold online; I’ve never seen it in stores.

I’ve posted about it several times in my cleft group, and so far everyone who has tried it has also had success with it.

Cleft babies have a lot of re-flux so you need to feed the baby in a more upright position. Also, take breaks along the way to burp baby.

Baby may need to sleep slightly elevated because of re-flux. I was hesitant to add this because putting anything unnecessary into their bed is a big NO NO due to safety risks.

So, if you are encountering sleeping issues that you believe may be related to reflux, I encourage you to speak to your doctor and see what they recommend.

Be prepared to be covered in spit-up until you get through palate repair. You can do things to help with the reflux but you just need to get used to smelling like baby vomit for a year.

Babies with cleft palates typically can’t use a pacifier because they have no suction. This can be especially challenging when you just need something to soothe your baby.

I tried a few and didn’t have any luck. But a lot of people in my groups have had success with the WubbaNub. If you do decide to use the pacifier you need to remember that they are not going to be able to use it immediately following lip and palate repair.

So having to take it away from a baby that loves the paci, may not be worth it.

Cleft babies drool A LOT! Like A LOT A LOT! Like more than I’ve ever seen another baby drool lol! These bandanna bibs were my saving grace; I think at one point I had about 30 of them.

They needed to be changed frequently due to the amount of drool, so having a lot was helpful. What I loved about these on Amazon is that they worked great and they were pretty cheap compared to others I found locally at stores like Target and Walmart.

The ones I have linked are a 10-pack and they go on sale a lot! So if you can get them under $20, I’d stock up! Here’s another option for girls too.

Expect food to come out of their nose! If you have a cleft palate baby, expect to see lots of food coming out of their nose when you start solids.

I chose to wait until my son was 8 months before we started solids. He just didn’t seem ready before then and honestly, I was worried about how it would go with his cleft.

I found that different consistencies affected how well he was able to eat. For example, he could eat sweet potatoes with no problem because it was really smooth, but applesauce was a no-go. It would all come out of his nose, which burned, and he would get really upset.

Also, stage 2 foods didn’t work at all – they just caused him to choke. So I recommend trying a couple of different consistencies and see what works for your baby.

Food is going to come out of their nose no matter what you do, but you can definitely find a puree that is easier for them to eat.

Using flatter spoons for feedings seems to make eating easier. Also, try turning the spoon upside-down inside their mouth; this seems to help a lot. You will need to have patience with this.

It took my son about a month before he got used to eating purees or even wanting them for that matter. This is challenging for them so just keep trying.

If the baby is really not interested in eating solids, just take a break for a few weeks and try again. Baby might just not be ready yet.

Swaddle that baby! So this probably isn’t cleft specific, but my cleft baby had a horrible time sleeping on his own. I literally slept sitting up in bed, with him on my chest, for his first 6 weeks.

I finally couldn’t take it anymore and I asked for advice online and was told to try swaddling. Sure enough, it worked like a charm and he slept alone with no problems the first night I swaddled him!

My other kids never needed or wanted to be swaddled so it never occurred to me to do this. These swaddles from Amazon Basics are great because they come in a pack of 3, they are super soft and stretchy PLUS they’re cheap!

I hope this information helps you out! You’ll learn a lot during your cleft baby’s first year. It can seem really overwhelming at times, but just remember to take things one day at a time. And if you feel like you need help, make sure to reach out to someone. Facebook groups saved my sanity that first year.

If there are any tips you’d like me to add to this list please leave them in the comments!