Your Child has a Cleft Lip Now What?
75Have you Just Learned that Your Baby is Going to Have a Cleft Lip or Palate?
Most parents learn about their child having a cleft lip or palate through ultrasounds at the obstetricians office. We were not that lucky. Our youngest child Preston was born with a bilateral cleft lip and palate. We found out about his situation at birth! Boy, we were surprised to say the least.
Notice I used the word situation and not problem. It is a situation not a life threatening problem. If you are an expecting parent of a cleft lip or palate child it is not the end of the world and once you spend some time in a neonatal intensive care unit you will realize how fortunate you are.
In Preston's case he had to spent 11 days in the hospital after he was born. Other than his lip and palate he was a perfectly healthy baby. See the problem was he had to learn to eat and that is the biggest concern at birth of a cleft lip child. They are unable to form the normal suction around a nipple to draw milk from. So it took him 11 days for Preston, Mom and Dad to get it down pat before they let him go home from the hospital.
You may experience a longer or shorter stay at birth. Shorter more than likely if it is only a single cleft. Also your pediatrician and obstetrician should be preparing for you this immediate goal of teaching you and your baby how to eat prior to birth.
This is the biggest obstacle to overcome. Once this is accomplished you will need to work on an intensive treatment plan. In our case Preston will probably have to have surgery until he is full grown. If it is only a single cleft you may only have one surgery ever. You will know soon enough.
Below is some before and after pictures of Preston.
How we felt on the day of his first surgery.
The day of his first surgery was very trying on mom and dad. As you can tell Preston did not have a concern at all. We knew that the next time we saw Preston after his surgery he was going to look a lot different than what he did before. We were excited and apprehensive at the same time. We were going to leave the hospital with a different baby.
He has had four surgeries so far and is getting ready to have his fifth. The one coming up is not a major one like his first two were. They are replacing the tubes in his ears. This is normal for many children and we wont lose sleep over than one.
The toughest part of his first surgery was the wait and not knowing what to expect. We were told that his first surgery was only going to take four hours and it turned into eight! let's face it though they did a lot on that first surgery. I rather a doctor to be through than be in a hurry. :P
Just remember if you have just found out that your child is going to have a cleft lip or palate it is not the end of the word. I, Dad, actually developed a sense of gratitude when he was in the hospital for the 11 days after birth. He was in a neonatal intensive care unit, there we met parents that would not leave their child for fear that if they did they would miss their last breath. Once you experience that you realize that things could be worse. Reminds me of the old cliche, "I used to think I had it bad because I had no shoes, then I met a man with no feet".
If you have any questions please leave a comment below an either mom or dad will respond.
- Pediatric Associates of Brunswick
The Home of Dr. Townsend Cooper, Preston's Pediatrician - Dr R Dean Glassman MD - Plastic Cosmetic and Reconstructive Surgery - Breast Augmentation, Breast Li
Preston's Plastic Surgeon
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Paul and Melissa, you are GREAT parents and Preston is just AWESOME! No one understands the impact of birth defects on the parents and the child until you go through it. I know this site will help and support a lot of parents and families who will be going through similar experiences. The greatest fear is the unknown and this site takes that away and shows you what can be done-- and about the journey it requires. PJ
My wife and i found out today via ultrasound that our baby will have a unilateral cleft palate.
We already have a 5 year old beautiful red headed girl who had no issues and this comes as a shock (6 hours old shock). So I am hitting the web (overwhelmed) trying to weed out pertinent info. I feel like my stomach has bottomed out.
Hi Peter,
The shock is normal. Just imagine we were not aware of Preston having a cleft until the day he was born and that was with a bilateral cleft lip and palate.
I can tell you this. He still has a lot of work to be done and he is no different than any wiry two year old you would ever meet, All BA little boy.
Keep your chin up it is a tough revelation to find out but after you live through it and the first surgery you will miss the wide smile that you grew accostomed too.
If you will send me an email from here I will be happy to talk with you via telephone or email.
Regards,
Paul
Thanks Paul.
My email is included.
(admin-at-maconlysource.com)
I am just trying to put things into perspective now. We have a fabulous 5 year old girl and having now a boy should be equally wonderful. We also have a great Cleft team here at Children's Hospital in Vancouver so our son will be well cared for. We will meet with them in the New year.
I just wanted to thank you for the information you've shared. It's been so helpful. We found out in October of '07 that our little boy (our first child) has a unilateral cleft lip. He's due in 4 more weeks. It's great to hear from people who have been through the birth and the surgery. Right now they don't think he has a cleft palate, but they can't be completely sure until he's born. I understand the feelings Peter is going through. It was so hard to alter your expectations of your dream of the 'perfect child'. Both my husband and I were able to put things in perspective on Tues. We were in line to vote for the primaries and there was a little tiny boy with a shiny little bald head. He was a cancer survivor. We both immediately thanked God for our little boy's 'wide smile.'
Paul and Melissa,
Boy do I relate to this story. I also did not know until the birth of my daughter that she would have unilateral cleft lip. I remember how trying her four month (first) surgery was on both my husband and I. Now I am pregnant with our second (first trimester) and will just have to wait to see, but am hoping this baby does not have a cleft, or any other problems for that matter.
For all the parents out there who have or will have a child with celft lip and/or palate, remember that your child is just as awesome as any other child.
I live in Barbados where I never even saw a bilateral cleft but two years ago I give birth to my son who was born with a bilateral cleft and palate. My journey over the past two years has not been easy and sometimes I felt like giving up, but reading stories like these by people like you who have been here before has giving me the courage and determination to press on. I was disappointed at first but it comes naturally now caring for my son. To date he has had the lip and palate repaired and after the holidays he will have additional repairs done to the soft palate and tubes placed in the ears. He is not talking as yet and this is challenging but I have hope and people like you guys gave me that hope, so to all of you THANKS A MILLION.
Love Alicia from Barbados
Paul,
I commend you for your courage and maturity in doing this site. I remember when my daughter, now 12, was born. For several very long minutes she didn't make a sound. I found out later she was born with a blood clot in her brain. Needless to say it scared us to death. Thankfully, she spent 2 weeks in the hospital and recovered.
I, myself have lived most of my life with clinical depression and later learned I'm ADHD. I hope to put together some pages here about them to encourage others. They both are so misunderstood.
I have a few pages on here now on computer issues, internet issues and guitar lessons. The best of luck to you. Your son is fortunate to have a Dad like you.
God Bless
Joe Russjoeruss56@gmail.com
hi. my name is shanna. 2 months ago i had my first child, a little girl, Payton, who has unilateral cleft lip and palate. So far i have managed to keep my sanity, mostly because of sites such as these. It is nice to know that I am not alone and to have the words of others who have done this before to ease my mind. Preston is beautiful. I hope for the best for him and you all. Thank you for sharing your story.
Payton has her first surgery the 22nd of this month. I feel the exact same way that you felt when Preston had his 1st. I am very excited for her and scared at the same time. The only thing that scares me is the fear that I cant afford all the surgeries that she may need. How do you deal with the financial aspect of this condition?
I am so grateful for people like you that can share their stories with people like me. We just found out yesterday at out 18 week US that our baby has a bilateral clef lip. We have three beautiful daughters and this is truly a shock. You feel like you are pros at the pregnancy thing by the 4th baby and then you get this kind of news. I am worried about all the what-ifs and unknowns. My once exciting pregnancy has known turned me into a bundle of nerves.
Thank you,
Mary
I just wanted to keep you guys updated. Payton had her surgery lastis month and she is beautiful I cant believe that surgery made such a difference. Her palate surgery in December. I am anxious about this one because the first one had me a bundle of nerves. Things are moving right along. I am just taking it day day. And Mary everything happens for a reason, a mother of a baby with cleft gave me the best advice she said that you were given this gift because a lot of people out there couldnt handle it you just have to look at it like you get to experience things in your life that most people never will have to it enriches your souls and makes you and your child that must closer and stronger. good luck and i will check the page for your updates if you have any questions i would be more than happy to help if i can
my son has cleft lip and palate, very soon he is going to have his first op he is nearly three months old. i have coped very well all the way through but now i am very scared, i feel as though he is going to sem as though his a different child and i know its 4 the best and for his own benefit but i love him the way he is his perfect. i will update you on how it went and how i feel afterwards i just dont know what to expect.
My 4 yr old was born with cleft lip and cleft palate and we didnt find out until the day he was born of course we were concerned wanting to find out everything we could about it and he has had 5 surgeries and started speech classe when he was a year old. Now you cannot tell he has ever had anything because the doctors did such a good job and he doesnt talk through his nose at all like some do because of him starting speech as such and early age. My main advice is to start speech EARLY. It is so helpful. I never thought they would be able to teach a 1 yr old to speak properly without the baby talk and everything but they did a wonderful job. No one can tell he had a cleft lip or palate. He had a unilateral cleft lip and the palate was in the hard and soft palate.
I have a beautiful 1 year old little girl who was born with a unilateral cleft lip only. We were not aware of her situation at birth so it came as a major shock especially since our first child did not was not affected. Our second child had surgery at 12 weeks and I too missed the wide smile she once had, however, I am thankful for the amazing work of her doctor and her bright future.
I am now paralyzed with fear that it I get pregnant again our next child with also have a cleft lip and/or palate. If you promised me the same outcome as our second daughter, I would be ready and willing, but I am scared of the more heart breaking situations. I am sure that we could endure that as well but.... please advise.
hey guys..just checkin in again. Payton is doing well, i hope that you all can say the same for your little ones. Her palate surgery is next month so keep her in your prayers. God bless
my daughter born with a complete cleft lip and plate she spent 4 day in the neo-natal intensive care unit i can say it is true when u spent a couple of days in the unit you relise how lucky we are she was healty other wise she had two surgery so far and have another one at the age of 6 i can say it was a piece of hard work to learn how to feed her but we did not give up she worth it she is now 2 and doing fine and u cannot tell she had a cleft lip she had her surgery done right here in her home country barbados her doctor is a miracle worker she done a wonderful joy and we are happy thanks to dr judy ward and her team ps. my daugther name is sariella hafiz so parents do not give up if your child born with a cleft lip or any facial deform there is hope
thank you so very much for sharing your story.I and my husband are expecting our 2nd child ( a boy), who we found out will be born with a bilateral cleft lip and palate, and our little girl who is 15 months old was born with no birth defects. Landon is coming in 2 months(May 6th).I just want to thank you again for sharing your story, it's a great encouragement. :)
My wife an I learned 2 days ago via ultrasound that our son (second boy) will be born with a complete unilateral cleft lip and palate. As you all well know, we both have been going through the emotional rollercoaster. There are many things we are coming to terms with even within the first few days but still have weak moments here and there. One thing we can't seem to shake though and we frankly feel very guilty about is the fear that we will think our new baby is ugly. We both feel ashamed about this but I can't believe that we are the only parents to have this fear. We want and pray to have the exact same feelings we did when our first son was born and I guess we are just looking for some assurance from some "veterans." What were your experiences when your baby was born?
Shanna: The advice you posted earlier about what the mother had told you is fantastic. My wife and I have actually been telling eachother that these past few days even before we read this blog. It's these thoughts and support from family that have been getting us through.
Any words of encouragement will go a long way.
My son had a cleft lip and had surgery when he was very young...Many people told me of the negatives of this and how "strange" it looked. It is years later and all that is left now is a scar on the lip and nose...He is a beautiful child now as he was then. My advice to all out there is do not worry...God gave you a beautiful child and it is fixable even if it takes time. A few more doctor visits here and there but so worth it. To Aaron I say do not worry, it is okay to feel scared and guilty but guess what you are just human. As time goes by you look back and realize it was not so bad and so worth it. And trust me, when your baby says I love you mom and dad-the cleft is unimportant. Just remember, take one day at a time and keep positive. It is hard to have your child look different, but you begin to not notice at all. Then, when the surgery happens, it takes a couple of days to get used to it, then it is alright again. Then, like I said just quite a few doctor appointments to work around the issues but again so worth it...God bless you both from a mom who has been there. :)
I don't have kids with Cleft Palate, but I was born with it in 1964. I had 7 surgeries over the years and if I can give any parents advice, it would be to give your child unconditional love and encouragement. The surgeries were tough, the pain, the long hospital stay and being away from Mom & Dad and my siblings was hard to take as a kid...the teasing at school was even more difficult...many days I would cry my heart out as I was subjected to being called ugly, flat nose. As well as the endless appointments, I had to go to Speech therapy in my early teens. My parents were always vague as to what I had, calling my condition "what you were born with". I had to actually research the proper name when I was in my teens. Needless to say, I didn't have a very strong self-esteem. Maybe this was a 60's way of handling it, but I wish, my parents could of been more open/encouraging, etc. Your kids will have other kids and parents ask them, why they have a scar under their nose, I still get that question from time to time...kids I can understand asking but adults, grow up!! Please let your child know that you love them and they are pretty/handsome or matter what. Even at my age, I am still self conscious about my uneven lip & scar...self esteem is something that needs to be taught as you grow up. Being born with Cleft palate/lip has also taught me to be a compassionate person, perhaps something that I may have not learn had I been born "normal".
To the parents who have a child with cleft palate, please don't think this is a death sentence, you were meant to have this baby in your life for a reason!! Your child isn't brain damaged or unable to walk...they just need some surgery to repair a defect just like a child being born with a hole in their heart...your cleft palate baby just needs you more, emotionally and physically...you'll be a great parents!!!
My daughter was born with bilateral cleft lip and palate. she had her lip and palate repair already. thank god she is 14 months now she is healthy, happy, and awesome for everyone. I never ever regret have her in my life. I had hard hard time when she had the surgery no matter what. it was killing me i wish i could take it over from her. but the only thing i am kind of worry about is her speech going. She started say some simple words now cuz people whom had cleft baby were telling me their kids have problem with speech. I hope anyone of your could help me out! I love her so much i will give her anything she wants. I just want her to be a normal child like others. I don't want people look at her or treat her in different.
Hello,
This website is so great and I thank-You for sharing your story and allowing these discusions to take place. Preston is just amazing and by the sounds of it he gets that trait from his parents.
I have a 4 month old little girl, Kenzie. We found out 12 hours after birth that she has a cleft palate. We were shocked and to say the least scared. However, as the days passed and I learned more I realized how lucky we were. When the doctor came into our room that day she could have given us so many differant reports. I thank God everyday that he gave us one that the doctors say is "fixable". When the doctor told me that only hours after finding out about the cleft I thought he was crazy but now I understand what he means. Our daughter is perfect and amazing and the most pleasant baby you will ever meet. This journey is harder on mom and dad than on the baby. This is my second daughter and our first has no medical issues and we always wished both daughters were perfect and had no issues but in the wide scheme of things this issue is one we can handle and face head on. I have had an incredible life one with very little struggles or challanges and at first getting this news I felt God was giving me my turn but I am so fortunate that my daughter is normal and healthy. This cleft palate if anything gave me compassion and empathy for parents who get way worse news the day their baby was born than we did. So many things have to go right when baby is inside of you and I thank god everyday for giving us our amazing little girl and allowing me to realize that sometimes things may not appear perfect or what your version of perfect is but when you look around thongs could be alot worse. I was so worried that Kenzie would have ear infections, speech issues and all the things that go with this condition and I still have these fears but God gave me this amzing girl and we will deal with these issues together as a family and I know together she will get through all of these issues. This is an issue that is hard to cope with at first as we all want our children to be perfect but when you realize you have a healthy child that will be normal but you may have a few obstacles that are all "fixable" you realize how truly lucky you are. I commend all the parents on this site for talking about their fears and struggles and for realizing our children are perfect adn that God gave us this child and this issue for a reason. We may not know why and we may never know but God knows I love Kenzie and sometimes beleive it or not I love her more because of the Cleft as it has shown me that when things look bad they can be worse. I don't truly know I knew that feeling before Kenzie.
Thank-You all for sharing. It really helped. All the best to Preston. I know he don't need it as he looks and seems to be an amazing little boy that I know this condition only made him stronger.
We just found out at 16 weeks that my child has unilateral cleft lip & palette. What are the chances of him having other abnormalities. The doctor at the hospital has scared us to death saying the cleft lip / palette is only an indication that something else might also be wrong and it is upto us if we want to continue with the pregnancy. Considering that my cousin is Autistic we are so so worried. My first child a girl is perfectly normal and healthy. Thank you
I was born with a bilateral cleft lip & palate. I am 18 years old and I have had two surgeries, when I was very young. I am unfortunately financially unable to get another surgery to revise my scars and lip structure. Coming from a firsthand point of view, I cannot stress this enough, you must give your child endless amounts of love, and be as open and willing to talk about it. I wish my mom to this day would sit down with me and let me cry to her like I want to. It definately has taken a toll on my self-esteem throughout life. Especially when your children get older, I reccommend that you dont forget about their self-esteem, because you may not notice it anymore, but they do everyday. I can understand how its not easy to be that parent, and talking about it may feel uncomfortable because you may not know what to say. Just have your arms wide open. No one is ever born perfect, and everything happens for a reason. This was just a part of my plan.
I'm due in two weeks with a baby girl. I found out just last week that my baby has a cleft lip and palate. I'm really worried about her...
I knew a little about cleft lips prior to my daughter's diagnosis but my husband and family had no idea what it was. I must admit that despite looking at photos on the Internet, I never once thought it was possible for her lip to be so severe. The first time I saw her it was a shock but very soon all I saw was my beautiful daughter.
I feel very grateful to have a cleft child and have learned many lessons from her. The world would be a very different place if she had not been born and I swear that she will be famous one day - she has such a huge personality!
The only thing I quickly learned was that person without a cleft child really don't understand what it is like, especially at first (feeding is a challenge) and to be told "Oh you just have to deal with it"...I hated that. Of course I would deal with it, she is my daughter but that doesn't make her struggles and surgeries any less difficult on me, my husband or son.
I am so glad to find other hubs about clefts. The more awareness there is in the community about clefts the more understanding there will be of our children pre surgery.
MY SON CRISTIAN BRANDO DI ILIO WAS BORN ON OCTOBER 28 , 2011 , WITH A UNILATERAL CLEFT LIP AND PALATE . WE DIDNT KNOW BEFORE AND WE ONLY FOUND OUT WHEN HE WAS BORN . LET ME TELL YOU MY HEART BROKE INTO LITTLE PIECES . IT'S BEEN HARD FOR ME DEALING WITH THIS BUT I LOVE HIM SO MUCH . I NEVER KNEW ABOUT CLEFTS . IT CAME HAS A REAL SHOCK . I CAN'T WAIT TILL HIS FIRST SURGERY .
I HAVE A SON WHO IS A CLEFT LIP AND CLEFT PALETE. AT FIRST I WAS SO SHOCK BUT AS DAYS PASS I ACCEPTED HIS CONDITION AND LOVE HIM MORE.
cathy 4 years ago
paul and melissa, you have done a wonderful job with this site. its very heart breaking and yet joyous. to see my wonderful preston and how far he has come. its kinda brings you back to reallity to see just what a person has to go through in life. although he has had the obsticals, it doesnt change the wonderful and energetic boy he is. thanks for helping other parents like yourselves learn about clefts. we love yall