Children born with Cleft Lip or Cleft Palate
82Discovering 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.
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
Find the Pigeon Bottle at WWW. childmed.com
Preston at Two Years old
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Take heart , todays surgeons are magicians. They will fix your babys smile too
regards Zsuzsy
Thanks Zsuzsy. Luckily we have a wonderful team of doctors that have done an awsome job with preston.
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!
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.
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
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.
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
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.
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.
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
Hey Jessica, Check out ameriface.org This would be a good place to start.
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?
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.
awws
Hi, I am 16 weeks pregnant and my child has been diagonised having cleft in the right side upper lip & palette. I feel devastated. The doctor who did the screening / ultra sound told us "this is just an indicator that there may be other chromosomal abnormalities" and that i should do an amnio test. Also said that Amnio test doesnt guarantee anything, quite possible that the child has other chromosomal abnormalities that Amnio test cannot detect.
Have any of you mommies undergone Amnio Test after finding out cleft lip / palette situation ?
Also did any of your child have any other abnormalities along with this cleft thing ?
Myself and my husband are dead worries....we can overcome any cosmetic issues but if the cleft is an indicator of any other abnormalities then my husband wants to terminate the pregnancy.
PLS HELP !!!
My son Tyler was born with Cleft Lip and Palate... He is now 6 weeks old....I did decide to have an Amnio after we found out about his...He also hid his beautiful face in all his ultrasound's so we didn't find out until I was 8 1/2 months pregnant...So I was shocked...I had to know if anything else was wrong...I just wanted to be prepared for what was to come next....I had the Amnio the same day and we got the prelim results 3 days later...They said everything else was okay....Tyler at this point shows no other signs of it being linked to anything else...He is scheduled for Surgery January 12th 2011 at AI Dupont Hospital....Good luck with everything...
Hi my name is tisha i just learned that my child has cleft lip.i just found out about it Monday .I'm starting to think it was from some of the medications I was taking.um the doctor gave me oxycodone for my back.so do u think I can sew that doctor?um I know it will be hard for me to look at the baby when he firsts comes out..don't know how I'm going to handle when the outside world be looking at him.wat to do?
Hey mrush726. Hey I just wanted 2 no how old do they hv 2 b before they start surgery? Thanks
Preston is so handsome! THank you for sharing your story!
I was 4 months pregnant when we were told that our baby boy had a cleft lip on the left side. I had so many different emotions. I cried for 3 days over the news. We were sent to UW Medical for a 3D ultra sound and they wanted to do a Amino Test because they thought something else could be wrong. We decided not to do the test for we new it wouldn't matter to us in the end, we wanted this angel.
In the fall I began to tell a few co-workers about the ultrasound. I had two women bring in pictures of little boys with their families stories of having cleft lips. (one in now 21 yrs old and other is 5 yrs old.) I realized I'm not alone and it's more common than i thought.
Our beautiful baby was born C-Section in December of 2010. His gap was fairly large on the left side and also had a cleft palate. I was shocked when I first saw his face for not knowing what to expect. But when I held him and saw he was perfect in every other way we were blessed.
He is now 3 months old and wears a mouth piece attached to tape on his cheeks to close the gap before his first surgery. It has gone from a 11 mil to a 5 mil. He feeds with a squeeze bottle and a special nipple and is about 13 lbs. (he loves to eat about every two hours.) When I was pregnant a woman wrote to me and told me "we miss his kissing his celft lip and nose and you will too." I thought i don't think so I will want him to have surgery as soon as possible! Not ture....I will miss this little face once he has surgery
in a couple of months. We take him everywhere and show off our blessing. I truly believe that GOD gives baby with Cleft lips to special MOMS!
I gave birth to my daughter, Emma Grace on 12/9/2009.. and SURPRISE!!! Complete unilateral cleft lip and palate. I had not known prior to giving birth and it is hard for me to say this but, i wanted it fixed right then and fast. I had a C-Section, so i was strapped to the table- like a raging drugged monster.it is a huge pill to swallow when you dont know before hand. But, I love my baby girl so much..and yes, as a mother...I miss her 'funny face'. It did take a while for me to comprehend what it entailed and what it really WAS. Emma has had two craniofacial reconstructive surguries, she is now 18 months old and you can hardly tell at all. I think Preston looks amazing! Ive heard of Ameriface, im located in florida and went with Childrens Medical Services. It provides care for life for anything that cleft lip/palate could affect.
I do recommend EAR TUBES. She got hers in her first surgury @ 10wks and they fell out a couple of months ago and since.. its been hellacious ear infections. So, we are going to have to put her under again for new ear tubes..
I would love to share photos of her and her surgical procedures.
Thank you so much for putting your story out there! I myself just recently had a bouncing baby boy on Dec 8th, 2011. We discovered at our 20 week ultrasound that our son had a complete bilateral cleft lip and complete bilateral palate. We were devastated when we heard the news....the doctors also told us that with the cleft the chances of him having genetic anomalies was greater and they recommended an amniocentesis. After taking the weekend to decide, my husband and I came to the conclusion that we wanted to go ahead with the procedure. Thankfully a few days later we got the preliminary results back and everything was okay. We decided to go to Norfolk Virginia to the Childrens Hospital of the Kings Daughters. Our plastic surgeon is Dr. Inciong. The craniofacial team is wonderful! Gavin just underwent his first lip surgery at the age of 10 weeks. He looks great. Before he was born, all I could focus on was getting his lip/palate fixed. I was scared of what he would look like, scared that I would be ashamed of him, and of what people would say/think. All it took was one glance at my son after he was born, and all of my fears faded completely away. Words can not express the way that you feel when you first hear your child cry and meet them for the first time. We are still in the process of healing from his lip, but he's doing great! The craniofacial clinic taught us how to use the pigeon nipple while we were up there (we're from south carolina) and Gavin is getting use to it. Before his surgery we had learned to feed him using the Johnson Mead squeeze bottle with a nuk nipple. The hospital here wasn't as familiar with the pigeon and wasn't sure how to use it properly. Gavin had to stay in the NICU for two weeks after birth until he was feeding well.....and it took my husband and I taking over the feeding to really get him fattened up so they'd let us come home. We are scheduled to go for his first palate surgery end of May :-) I miss his big smile from before his surgery, but his new smile is just as cute! I wish all of you Mommas the best with your children. Just know that it all does end up being okay. Yes the surgeries are scary and stressful, but if you have faith in your surgical team it will all be okay! Good luck to you all!
barth that i am born in
RIZWANPRESENT 4 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