create your own

Children born with Cleft Lip or Cleft Palate

83
rate or flag this page

By mrush726


Discovering Your child has a Cleft

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.

Preston Learning to eat


Our Biggest Obstacle

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

Dealing with Surgery #1

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.

Preston before surgery #1
Preston before surgery #1
Preston awaiting surgery #1
Preston awaiting surgery #1
Preston just out of Surgery #1
Preston just out of Surgery #1
Preston doing well the day after surgery #1
Preston doing well the day after surgery #1
Preston after Surgery #1
Preston after Surgery #1
Preston's New Smile!
Preston's New Smile!

What would I say to someone who is expecting a child with a cleft

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.

The Pigeon Bottle for Babies with Clefts

The Pigeon Bottle is designed specifically for Babies born with a Cleft or poor sucking ability
The Pigeon Bottle is designed specifically for Babies born with a Cleft or poor sucking ability

Preston at Two Years old

Print   —   Rate it:  up  down  flag this hub

Comments

RSS for comments on this Hub

RIZWANPRESENT  says:
2 years ago

Roses are famous for grace,advocates are famous for case,horses are famous for race,but u r famous 4 your smile on ur face

Zsuzsy Bee profile image

Zsuzsy Bee  says:
2 years ago

Take heart , todays surgeons are magicians. They will fix your babys smile too

regards Zsuzsy

mrush726 profile image

mrush726  says:
2 years ago

Thanks Zsuzsy. Luckily we have a wonderful team of doctors that have done an awsome job with preston.

Carson's mom  says:
2 years ago

Your little guy looks wonderful! We're expecting our little 'wide smile' in March. We found out he has a unilateral cleft lip. Right now they don't think it's his palate, but we'll find out for sure at birth. Thanks for you information. It's so helpful!

mrush726 profile image

mrush726  says:
2 years ago

Congragulations Carson's mom on the new addition to your family. I know he will bring much joy into your life. I know you must be getting very anxious and scared with the upcoming delivery of your son. If you have any questions feel free to drop me a line and I will try to share what I have learned and/or experienced. Please keep us up to date and let us know how your new little bundle of joy is doing. Thanks.

ak_gurl  says:
18 months ago

i was born w/a cleft lip and palate also! i've been in and out of hospitals since i can remember, now i hate hospitals! and it was't cheep either, i live in a rural village in alaska and it wasn't too fun going to appoints and missing school. so after i got braces removed(after the braces were removed i had a big ole gap in my front teeth and was stuck using a retainer w/two fake teeth, i stoipped useing those too), i told them i didn't want to do nothing more done. i was pretty stubborn about it and my orthodontist at the time got fed up w/me and stopped trying to help!(i was 14 at that time!!) so yeah i dint return after that. because they've removed two of my front teeth when i was about 10 or so for no reason! andi was pissed as heck. and about another two years later another tooth started growing front to back instead of side to side and they also removed that tooth. now im stuck w/no two front teeth but it only looks like im missing one. i told them, i was born like this and i wanna leave this earth looking like this...no use trying to correct something if it's not a health risk or bothering me! well thats how i felt at the time, because i was tired of missing so much school just to get them tightened. Now i kind of regret it because im supposeto have another surgery to correct my jaw or something(no reason to correct my jaw, after i got my braces removed, it messed up my bite, now i can't really bite my nails. there's a gap where my front and bottom teeth are suppose to meet), idk its been years since i had my last surgery and i still look normal, but w/two missing teeth and a scar above my lip. i feel blessed w/that scar:D

shelly  says:
11 months ago

My son was born with a complete bitaleral cleft lip and palate. His lip has been repair since his was 3 months old. I am now nervous with the repair of his palate. I felt the same way you felt with the first surgery. I could not eat while he was in surgery, i felt guilty and sad. I was praying through the day hoping that he will pull through and that i know in my heart that he is a strong boy. I was thankful that he made it through the first surgery. Now I am nervous with his next surgery, the repair of his palate. I was wondering, if this is a difficult surgery than the first one? I had hard time feeding and making him comfortable with the first surgery. I just hope that this second surgery will be successful. I was also wondering about the bottles. I have hard time finding it here on my side of this earth. I hope you can help me where i can order it through the internet. Thank you for all your support.

mrush726 profile image

mrush726  says:
11 months ago

Hey Shelly, I wish you and your little one the best during your next surgery. Preston's surgery was harder than the first, I don't know if this was because he was older and was more aware of the pain or what. After his first surgery he pretty much slept very well and Tylenol kept him comfortable. After his second surgery it was a very long night! He cried most of the night and didn't sleep much at all. But once he got used to his new way of eating he did seem to feel a little better. For Two weeks after his surgery I had to feed him through a medicine dropper with a piece of plastic tubing attached to the end.. This makes feeding time very time consuming so if you have someone that can help you out during feeding times you might wanna ask for their help. Sometimes it would take 2hrs to feed preston. He would get cranky cause he wasn't getting enough, fast as he wanted it and my arms would be so tired from trying to maneuver him in one arm,plus try to suction the milk into the dropper. One good thing though preston never took the bottle back after his second surgery. After his two weeks with the dropper I bought him a little sippy cup and just took the little stopper out of it so he wouldn't have to suck and it worked out excellent.

You can find the pigeon bottle at www.childmed.com once there click on the parent store button on the left and search specialty bottles and feeders.

If I can be of more help to you or answer any questions feel free to email me at mrush726@yahoo.com

ThisGirlsOpinion profile image

ThisGirlsOpinion  says:
11 months ago

I feel so sorry for what you ladies are going through, but please do not post your full email addresses on hubs for the world to see. Use the profile email communication to write each other because spam bots will target your email address if you type it out.

jenice  says:
11 months ago

Hi Everyone,

My younger brother was born with a celft palate, it made for an odd childhood always in hospitals or Dr's office's. Anyhow we had the same problem with keeping his hands out of his mouth. His first Dr. actually put casts on his arm like they were broken, in the middle of summer in Southern California. He was miserable.

My mother took that opportunity to make a product that wwas more practical...Pedi-Wraps, they work great and now she sells them around the world. For any one who is new to the cleft world you should definetely visit www.ameriface.com it's a parent support group like no other, they get together once a year in Las vegas. Truly a wonderful organization.

Good Luck to all the dedicated moms, and beautiful babies here.

Jessica  says:
10 months ago

I know a baby boy that was born like 3 weeks ago and he was born with this. i live in olathe kansas and was wondering if you guys could help me get information of where i could get help with him.

I would really appreciate it. Thanks

mrush726 profile image

mrush726  says:
10 months ago

Hey Jessica, Check out ameriface.org This would be a good place to start.

Lisa  says:
6 months ago

How old is your son now? My 10 year old was born with a bilateral cleft lip and open palate. He has had numerous surgeries and right now we are just waiting on him to hit puberty so that we can start fixing his teeth. Now that he is getting older he realizes more that he has scaring and kids ask him about it and sometimes even make fun of him. He has asked us to find someone his age so that he can talk to them to so how they handle the teasing. Any ideas?

mrush726 profile image

mrush726  says:
5 months ago

Hi Lisa, Preston is only 4yrs old. So we haven't had gotten to this trial yet. Thankfully though our cleft Team is a wonderful group that has several gatherings through out the year for all of the children on the team so they can meet other children that are going through the same thing. We also have an option to be put on the list that our doctors give all new patients that list the contact info, childs age, and other info so every family has a list where they can find a family with a child close by with the same age and it makes it easy to be able to find a family. You could check with your doctor to see if he has another child that has been dealing with the same problem and see if that family would be interested in having you contact them with questions or maybe arrange a meeting for the two children.

Another great option is you could contact Debbie Oliver at ameriface.org. She is a Wonderful person and has always been willing to answer any questions we may have. She could probally put you in contact with someone close to you.

Submit a Comment

Members and Guests

Sign in or sign up and post using a hubpages account.


optional


  • No HTML is allowed in comments, but URLs will be hyperlinked
  • Comments are not for promoting your hubs or other sites

working