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Raising a Child with a Cleft Lip and Palate

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Finding out your child will have a cleft lip or palate is not the end of the world..

Finding out that your child is going to be born with a cleft lip or palate is not the end of the world. We were very surprised when we found out that our youngest child has a bilateral cleft and palate.

A child with a cleft lip or cleft palate is no different than any other child they just have a correctable situation if you have access to proper medical care.

Our Story

Many times this is discovered via ultrasound prior to birth. We did not have that luxury!!

We found out that our son, Preston, had a bilateral cleft lip and palate in the delivery room in a hospital that was not equipped to deal with his situation. He had to be transfered to a hospital in a larger city 80 miles away.

This was a shocking situation to say the least.

He wound up staying in the hospital for several days. The biggest obstacle was him learning to eat. That is the immediate goal with a child born with a cleft lip or palate.

See Our Cleft Lip Child in Action

He is no different than any other child he was just born with a correctable situation..

curated content from Flickr

Some of the special situations we have faced

Learning to Eat This is the most critical step and the immediate goal in the hospital after he was born. With a cleft lip or palate he could not form the normal suction around a nipple even though he tried. He was fitted with a device that was on the roof of his mouth to help with this.




Ear Problems Preston has had to have tubes in his ears twice. It is common for chilren with clefts to have ear problem, but then again it is common for all children and nothing to be alarmed about.



Stares While it is normal for people to stare at things which they do not understand, especially children, and it took a while for our other children and us to get used to.
Important!

Stares Can Be Funny Too...

A small girl was observing us in line at Dairy Queen and the curiosity was killing her. So I took the time to explain Preston's upcoming surgery and let her hold him.


She turned to her mom and said:

"So is that why you are saving money for the plastic surgeon? You don't have a cleft lip, Mom"
Speech Therapy While Preston has not started with it yet it is in his future. His speech is somewhat nasal and to be expected, but it is what will build his character and how he deals with it.

It is a Learning Experience

I have only talked about the situations that we have been through so far there are many more to come for our family. I will update this lens as we encounter them.

One thing to keep in mind if you have just learned that your child is going to be born with a cleft lip or palate that it is not the end of the world. Accept it as an opportunity to live and experience things that others will not ever have the pleasure to experience.

We have met new friends for life in our experiences and are the better for it.

Help and resources

Not everyone that has a child born with a cleft lip or palate is not as fortunate as we are. We took the time to research all of the available treatment options that were located near us.
State by State Listing of Cleft Teams
The best approach that we found used the concept of a cleft team. A cleft team allow your child to see the many disciplines needed at one time for them to help you make decisions about their care.
Parents: Cleft Links, A Wide Smiles Resource
A good starting point for new expectant parents

Giving Back - Helping others smile

We have been blessed with our experiences and always try to find ways to help others with our experiences.

Just click on the images below to find out more about these worthwhile projects.
  • Do you know someone that is having a child with a cleft lip or palate? If so give them a special teddy bear that will help bring a smile to their face.


  • Not all children are as fortunate as our Preston. Many children in third world countries do not have access to the level of care we are able to have for our child. We have had people try to donate us money and we always refer them to SmileTrain.org who reaches out to these children to help them.
  • The Ronald McDonald house has been a life saver for us during Preston's many stays in the hospital. They offer a home away from home and make the process much easier for any family who has a child in the hospital for any length of time.

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Doctors and Hospitals

Here are some links to all of the Doctors and Hospitals that Preston has been to.
Pediatric Associates of Brunswick
Dr Townsend Cooper is Preston's Pediatrician. He has gone the extra mile for us and has proven to be 1 in a million.
Dr R Dean Glassman MD - Plastic Cosmetic and Reconstructive Surgery
Dr Glassman is a board certified Cosmetic surgeon and has done a wonderful job on Preston. He also volunteers his time on various pediatric missions around the globe.
Nemours - www.nemours.org
Nemours is the largest children's provider of healthcare. Its mission is "To provide leadership, institutions, and services to restore and improve the health of children through care and programs not readily available, with one high standard of quality and distinction regardless of the recipie
Wolfsons Children Hospital
They provide valuable services to children in North Florida and South Georgia. It is tied to the University Hospital in Jacksonville Florida.

Truly a hospital for children catering to their special needs.

Other Pages I have Made About Our Cleft Experiences

Your Child has a Cleft Lip Now What?
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...
Dealing with stares and your cleft child
Some parents of cleft children do not take them in public before their first repair surgery, because they, the parent, become self conscience of their child's appearance and do not wish to deal with the stares...
Surgery and "Tater Logs" | Who is Paul Rushing
Well today Preston had another surgery on his ears. This one was a fairly minor surgery in the big scheme of things. They had to replace ear tubes and do some ear canal reconstruction. Total time from the time we got to the hospital until we were headed home was only 3 and a half hours.
Raising a Child With a Cleft and a Political Rant.. | Who is Paul Rushing
My youngest child was born with a bilateral cleft lip and palate. I have some before and after pictures of the start of his repairs in a previous post. I have a a page on HubPages that reaches out to people who have discovered that their child was going to be born with a cleft lip or palate. I usually receive an email or two a week from expectant parents and try to encourage them that everything is going to be ok.

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