Your Child has a Cleft Lip Now What?
72Have 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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Comments
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.
cathy says:
2 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