Every baby spits up. But with cleft babies, it's a little different. First you need to find a formula that work well with your baby. I had a doctor tell me that they have never seen a cleft baby who didn't have bad acid reflux so I would pick something sensitive and gentle. My personal favorite was Enfamil Gentlease for gassy and fussy babies. When cleft babies spit up its not uncommon for the milk to come out of their nose. Don't be alarmed when this happens. It doesn't harm the baby in any way, it probably just more uncomfortable.

Mouth sores are very common for cleft babies too. Depending on the cleft palate, the nipple from the bottle you are using will put pressure on the palate where babies without clefts don't. This was the worst couple days of my life with her so far. I was so worried that it was thrush because she had whitish pockets on the roof of her mouth. I could tell it was very painful for her to eat and it broke my heart. We took her to the doctors as fast as we could and they just said its sores from the nipple rubbing and putting pressure on her cleft. They told me that it would soon develop a callous and she would be able to eat again pain free soon enough.
I didn't believe them so I took to the blogs and found out that everything he said was true. But it was so hard for my little one to eat. So I would put the nipple on both sides of her mouth, avoiding the sores and it was tough but we were able to feed. As hard as it is its important to still try and feed them over the sores so it can harden up. It took about a week before things were back to normal. But switching to a softer nipple helps a lot. Here is a example of what they looked like.

Meet and Greet

So to help you pick your surgeon, they will often have a meet and greet. You are able to sit down the the surgeon and talk about the surgical plan and the procedures for your baby. This is the time to ask all the questions you have. Here are some good questions to ask:

1. When do they operate on my baby?
2. Where is the surgery done at?
3. Can you see any pictures of there work (keep in mind they will probably show you the best ones but its still good too see results of there work?)
4. Ask if there is any support groups you could join?
5. Ask for the timeline of surgeries your child will need to have?
6. Ask about insurance?
7. How long have they been practicing?
8. Do they have a team of other doctors for your babes needs?

Make sure you feel comfortable with the surgeon you have picked. Its good to feel like you can ask questions in a safe environment because trust me you will have questions. Once you have chosen your surgeon the next time you will most likely see them is about 2-3 weeks after your baby is born to give you and the baby some time to bond and adjust.

Feeding a Child With a Cleft

Everyone told me that breast feeding a child with a cleft was next to impossible. Pumping was a option, but with everything you have to go through with figuring out how to even feed your baby and wondering if they're getting enough food, pumping became very overwhelming. But me being very stubborn, I tried and I tried to breast feed my baby. I got her to latch maybe once for 3 seconds. And for me not being able to breast feed my own child broke my heart. I felt like I would not be able to connect as well with her if i didn't breast feed. But women all over the world bottle feed and everything turns out just fine. In the end it was more important to me that my child was well fed and happy.
So I know of three different kind of bottles out there for cleft children. Pigeon nipple with one way valve, Mead Johnson bottle, and Haberman Feeder. For me personally I liked the Pigeon bottles the best. But when it comes to picked a bottle it all depends on what works for your baby. I wouldn't worry too much about buying a lot of bottles before your baby gets here because you never know what ones she takes too the best.

Mead Johnson bottle -Oldest bottle made for cleft babies. A squeeze bottle in which you place the nipple in the babes mouth and squeeze milk into mouth till you get the rhythm of breath, squeeze, swallow

Pigeon Bottle - The nipple is almost two sided. On the top it is made of a harder material. It is to be placed at the roof of the mouth covering the palate. And on bottom is a soft material so when touched lightly milk come flowing out and into the mouth. The nipple comes with a small valve which is places at the base of the nipple. The function is to be able to hold milk in the nipple the whole time making it easier to access milk so the baby does not get frustrated with not being able to suck. 

Haberman Feeder- Also a squeeze bottle but is made to form around the cleft better. You are able to control how much milk flow goes into your babies mouth by aligning the indicated marks with your fingers. Also made with a valve so milk staying in the nipple for easier sucking access for baby. 

    Most hospitals will give you one bottle of either the mead Johnson bottle or the pigeon but most likely not the Haberman because it is the most expensive of the three. All bottles can be found on Amazon but beware, they are hard to find. 

My Story

For most people the last thing they think about when pregnant is my baby might have a birth defect. I know for me it felt like my whole world was turning up side down. I was going in for my 20 week check up with my obgyn with my husband. I remember as we were sitting there and the nurse was giving me my ultrasound she went silent. In my head I thought "what are the odds anything is wrong? my baby has been health and perfect all this time so there is no way anything is wrong" but still her reaction scared me a little but so i asked her if everything looked normal and all she said was "the doctor will go over your results" i could literally feel the hair raising on the back of my neck. We moved to a different room and waited for the doctor to come. He came in, sat down and told us the bad news. Our baby has a cleft lip. At first I didn't believe it. Not me. This couldn't happen to MY baby. Me and my husband left the room barley speaking. It wasn't till we got into the car that the tears started to flow.
Back tracking a little bit. My dad through out the years had been involved with a organization called operation smile. It was founded by a couple name Bill and Kathy Magee in 1982. Operation smile goes all around the world helping children and adults who were born with a cleft live a happy normal life with the help of surgery. Ever since I was little I knew bout operation smile because of my dads involvement. I would try and raise money for the kids who were waiting for surgery but didn't have the means to pay for it. I had sibling who went on missions (1-2 week trip to a country to help operation smile), I was involved with the operation smile club at my high school, i thought i knew all about cleft lip and palate but to be honest I never really gave it too much thought until I found out we would have a child with one.
I called my dad on the way home letting him know the news. Like I expected he was shocked but then he told me by some chance he was heading up to a meeting later that day with the founders of operation smile and we both decided that it would be a good idea if I joined. As we sat down with bill and kathy I could barely get my words out I was so emotional. But instead of jumping into telling me all about how this was fixable he slowly took my hand, looked me in the eyes and asked me how I was doing. He told me he understood. He really took the time to connect with me and in doing so I knew right then and there that I was going to get though this. I had the support of my loving husband and family and now the support from bill and kathy who made it there life mission to find and fix children who had the same exact condition that my baby would have.
The next step for me was to go to the Fetal Medicine Group for a 3D ultrasound to see in-depth, what kind of cleft my little baby had and to see if possible if she had a cleft palate also. I highly recommend going to a place like this just so you can get as much information you can on the condition your child's cleft is. They told me it looked like a unilateral cleft, gave me a packet on surgeons around my area and sent me on my way. All I could do now as let my little baby grow healthy and strong until it was time to meet her.

Cleft lip and palate

Different kinds of clefts: Cleft of the soft palate, cleft of the hard palate and soft palate, unilateral cleft and bilateral cleft.

What is a cleft lip: A cleft lip a is a opening in the upper lip on one or both sides. Unilateral cleft is just one side and bilateral is both. The opening of the left can go all the way into the nose (usually indicating there is a cleft palate) or it can stop half way up the lip. 

What is cleft palate: Is a split in the roof of the mouth. It can involve the hard and soft palate depending on the cleft. 

Soft and Hard palate:

                               : 

The roof of the mouth is known as the palate. The hard palate is the front part of the roof of the mouth, and the soft palate is the back part. Because there is a split in one or both of the palate ear infections and hearing loss is common. Both treatable. Fluid builds up in the ears from eating and normal mucus build up that may need to be drained by tubes. It is also very common for cleft kids to not have a uvula because it is split on both sided of there mouth from the cleft. 

What causes cleft: Doctors can't quite give an exact reason as to why a cleft happens. It can be just random or it can be linked with problems with genes passed down from one or both parents, drugs, viruses, or other toxins can all cause these birth defects. Cleft lip and palate may occur along with other syndromes or birth defects. Pollution is known to be a big factor in cleft lip and palate. Also positioning of the baby in the womb when the mouth is developing can cause a cleft. They say if the head is down, pressing there chin to there chest it can push the tongue up and get into the way of developing the palate and lip. 

How often does this happen in the United States: 1 out of 700 babes in the United States are born with a cleft lip and palate. More boys than girls are born with a cleft lip and palate but more girls than boys are born with just a cleft palate. 

Treatment: Surgery, at the appropriate age can repair a cleft. In fixing a cleft you will need a team made of the following people.

1. Craniofacial plastic surgeon
2. Otolaryngologist, an ear, nose and throat specialist 
3. Audiologist
4. Pediatric Orthodontists 
5. Pediatric Dentist 
6. Speech Therapist 
7. Social worker

Welcome to my blog

Welcome to my blog! My name is Jasmine Adams and I am a mother of a little baby girl with a cleft lip and palate. This blog's main purpose is to help mothers who have children with a cleft lip and/or palate. Here you will find information to help you through your journey-from the right kind of bottles to finding the right surgeon for you sweet child. I am not claiming to know everything about clefts but if I could help someone out there who is going through the same struggles I went through, I'm more than happy to help. The main thing I want all mothers of a cleft baby to know is that you are not alone and there are so many resources out there to help you get through this. It is not uncommon to feel heart broken when you first find out your little baby has a cleft. Some mothers don't even know until they deliver that their baby has a cleft. But I can promise you that you will learn to love that wide gummy smile. I know I did.