Children born with Cleft Lip or Cleft Palate

In most cases, If your child has a Cleft it can be detected during a regular ultra sound. Though sometimes it can go unnoticed when the doctor is unable to get a complete picture of your precious little ones face and you do not find out until your childs birth. I, myself had several ultra sounds due to other reasons such as diabetes and my son who wanted to be a stubborn little fellow wanted to hide his face torward my backside every time didn't find out he had a Bi-laterial Cleft Lip and Palate until he was born by a repeat c-section. At first I wished I would of known so we could of been better prepared and I could of delivered at a hospital more suitable to handle my situation. Then I realized I would of spent the rest of my pregnacy worried and scared out of my mind and all for no reason for my son was born a healthy little boy other than his bi-laterial cleft lip and palate.

Don't get me wrong, when you find out your child has a cleft lip or palate it will be very devastating to you. No one wants to know their precious little one will be born with any medical problem. But, I can tell you this much if you find out that you are giving birth to a child with a cleft and that is the only problem he/she will have don't spend your time drowning in sorrow, Just be thanking god that your child has a problem that is only cosmetic cause after you spend time in a neonatal Intensive Care you will find out how truly blessed you are.

When my son Preston was born he had to be sent to another hospital about 2hours away because his bi-laterial cleft and Palate was so severe. He was sent to Memorial Medical Center in Savannah, Georgia because they were more apt in teaching him how to eat. This was the most devastating for me because I couldn't be with my child. I was kept in the hospital in Brunswick, Georgia for 4 days because during my c-section they discovered I had a severe case of endometreosis and so they wanted to make sure I was well enough before I left because my doctor knew as soon as he released me I was heading for a 2 hour trip and would not be where I could rest as I should.

Thankfully though I was kept up to date thanks to dear dad who followed son to savannah and the great nurses there. They would call me regularly to me inform me in any progress or obstacles that preston was having.

Preston's biggest obstacle was learning to eat. His palate was completely opened up with just a little of an edge on both sides of his palate. So, for the first couple of days preston was on a feeding tube to make sure he got the nutrients he needed. Dad and the nurses worked with preston daily trying to get him to suck from diffrent types of bottles. They finally got him to take some what to a new kind of bottle that had just been recently introduced for children with cleft. It is called a Pigeon Bottle. Which I liked because it was more like a normal bottle compared to the original bottles they used for children with clefts that looked something like a baster. The pigeon bottle looks like a normal bottle except it is made of a very thin type of plastic that makes it easy for you to squeeze gently to the child doesn't have to suck so hard and the nipple looks kind of like a regular nipple just a little fatter and it is hard on one side. These bottles worked really well with Preston. If your are expecting or have a child with a cleft ask your childs doctor about it. The bottles are kind of expensive ($12.00 a bottle) but work really well and there are also programs that will help you purchase the bottles if need be.

Preston had to be able to eat atleast one ounce a feeding before he could be released from the neonatal Intensive Care Unit. So after about a week he was doing fairly well with the pigeon bottle and so the orthopedic Surgeon came in and made a mold of his upper Palate and made him a prosthetic like palate (like an upper denture) that we would have to put into his mouth during feeding time. Thus, giving him something for the nipple to press against to help him suck. The hospital kept preston a couple of days longer to monitor his eating with the mouth piece and to make sure mom and dad was comfortable with how to insert and take out the mouth piece. After that we were finally on our way home.

A little tip though about the mouth pieces. They do fall out regularly and sometimes I would find myself having to hunt his mouth piece. For example, This is a funny story but I have to admit it wasn't so funny when it happened. On the day we were to bring preston home from the hospital his Brother Tyler, then 7yrs old wanted to tag along to bring his baby brother home. On the way home tyler was so excited and wanted to ride by his brother. He watched in awe and studied his brother carefully with a watchful eye on the road trip home. Everything was going good and my husband and myself were discussing how good it was gonna be to finally be home then all of a sudden Tyler starts screaming and practially climbing the back seat. Me and dad freaked out and pulled to the side of the road only to hear tyler scream out that his brothers tongue had came off and fallen out of his mouth. Immediately we knew what happened and I looked and there laying in his car seat layed his mouth piece. So it took big brother a little time to get used to the mouth piece and we had to explain it was just like granny's dentures..lol

Preston has had several surgeries already and has more to come. I have to admit it is never easy handing your child over to the nurse who will wisk him to the back and get him settled in for surgery. It is always hard knowing your child is fixing to go through something so painful and has no clue about it. You find yourself feeling guiltly, atleast I did. I felt like all my baby knew was his moma was loving and cradling him one minute and the next he was in pain. I have to admit preston done very well with his first surgery to repair his lip. We were at the hospital that morning at 7 a.m and after a long surgery that went a couple of hours longer than we were told to expect Preston was took to his room where we met him. We stayed over night and Preston was released the next day. The two most dreadful things after surgery were the no-no's (arm braces that keep them from bending their arms torward their face) and the feedings. After surgery Preston had to eat from a syringe with a plastic tubing (looks like a needle syringe with just a little plastic tubing on the end) thus, making feeding time a little difficult and long. So don't be affraid to ask for help from a family member or friend during feeding time.

Also, you will hear people talk about how they miss their little ones old smile. Believe me this is true. You are happy that your baby has made it through this milestone and is doing well but at first you won't believe how much a diffrence it makes in their looks. It is amazing! But you will find yourself remembering how precious that smile you grew to love looked and miss the way of certain features. Don't fret though, You will definetly get used to the new smile that your baby has shined your way and it will brighten your day every time you see it.

If you have recently found out you are expecting a child with a cleft or whether you were like us and had a child born with a cleft and hit the internet to find out all you could about clefts then first and foremost I wanna say congragulations on the new edition to your family. It is hard learning that your child will be born with a craniofacial disorder but don't worry, It is cosmetic and can be fixed. Be thankful that you have a child that made it through those 9months inside of you and you are able to finally see and hold them. Be thankful that you will be able to bring your baby home and not have to spend your days and nights in a neonatal Intensive Care Unit Praying that your child will make it through the night or day. Yes, There are hurdles that you will have to jump but you will jump them and you will have a wonderful baby with a Beautiful smile. May God Bless You and if you have any questions that you wanna ask I will be more than happy to answer.