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
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..
Preston and Dad Befo...
Preston Day of his F...
Preston on His Secon...
Preston and Dad in a...
Tater Logs After Sur...
Fun in the Yard
Buried at the Beach
Posing at Granny's
Preston After First...
Happy Baby Boy
Not so sure about th...
What You Looking At
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. 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
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
- 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
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.
Let us know what you think
or ask a qustion if you have one...
vanessa lucio wrote
I was wondering the name of the plate the was put on the roof of your sons mouth. My son was born November 12, 2008 and is still in the hospital due to trouble eating thank you. hlucio4@aol.com. thank you again
Posted November 23, 2008
Ryan wrote
My child was also born with bilateral cleft lip
and cleft palate. It is a trying situation but
a mangable one. We did know before he was born
due to 4D ultrasound but still was shocking to
see it when he was born i cried like a little girl,but he is doing fine now he is 19 months old now,we had a wonderful plastic surgeon at childrens hospital in New orleans,La where i reside. Dr. Michael Moses. Great lens
Posted August 18, 2008
BabyCoop wrote
what a great site to open the minds of those not seeing what you see! I would be happy to offer a link on my soon to be Specialty Childrens Mall to help others learn about cleft lips and be more sensitive and understanding of what both the child and parents have to go through!
Posted July 22, 2008
coastingalong wrote...
Just happened on your lens letting folks know and understand. Been there, done that for over 50 years but I survived thankful to loving, giving parents. When you learn to accept what life gives you, strength takes over. Your son will be o.k. because of you. Keep it up!
Posted June 13, 2008
EverythingMouse wrote...
What a great lens. I know something of what you are talking about. My son had a trach for a while as a baby and it was difficult to deal with sometimes when people said 'oh what a cute baby' only to almost literally jump back with horror when they saw. It was a a great life lesson. You just wish people would say what they are really thinking so you could answer them!
Posted May 14, 2008
collagen wrote...
Great lens 5* I am sure will be helpful for many and solving problem for others. Keep up a good work you are a great dad. Healthy Benefits of Water
Posted May 07, 2008
PaulaFarris wrote...
Great information! I don't need it now, but if I ever do it is nice to know where I can find what I need from someone who's been there. Congrats on LOTD!
Posted May 07, 2008
Recession-Proof wrote...
Paul,
Seriously inspiring lens. It's great to hear stories like yours. Thank you. Jesse
Posted May 07, 2008
spirituality wrote...
Congrats on lens of the day! This is a great introduction to the topic.
Posted May 07, 2008
Retro_Loco wrote...
Congrats on LOTD!!! Great lens. Best wishes to you and your family! :-)
Posted May 07, 2008
purple83 wrote...
Awww What a cute child thanks fora great heart warming share I hope the best for you and your family. Such a beatiful family.
If you get a chance check out my lens Just clik my name. Thanks again for a great lens very touching and 5 stars to you my dear :)
Posted May 06, 2008
miki_e wrote...
Thank you for a heartwarming lens and sharing an enlightening story about your family.
Posted May 06, 2008
ThomasC wrote...
It is so wonderful of you to share your experience with others like this! Congrats on LOTD! Great job!
ThomasC
Posted May 06, 2008
natdg wrote...
Congrats for being the lens of the day. It is a must read for parents to be strong enough and deal with the situation.
Posted May 06, 2008
chefkeem wrote...
Excellent lens, Paul. All the best to you and your fine boy. 5* Congrats to the well-deserved LotD!
Posted May 06, 2008
pyle_mountain wrote...
Nice lens. I like things like this that are positive and encouraging. Congratulations on your Lens of the Day award!
Posted May 06, 2008
poddys wrote...
Great lens, he is adorable. Luckily these days they can work wonders with things like cleft lips. I love the way you included so many photos and stories. Fingers crossed all works out ok for you.
Posted May 06, 2008
GreenRevolution wrote...
Hi Paul, I found your lens very beautiful and inspiring. You're doing a great job in promoting this worthy cause. Really well done! 5 *****
God Bless you and your wonderful family.
Posted May 06, 2008
LeslieBrenner wrote...
Congratulations on LOTD! This is a big problem in countries where access to treatment is difficult.
Posted May 06, 2008
mulberry wrote...
Tremendous lens. Sharing what you have learned will certainly benefit others!
Posted May 06, 2008
Christene wrote...
Congrats on Lens of the Day. :) If you'd like, you are welcome to join the All kinds of Families group.
Posted May 06, 2008
Greekgeek wrote...
Oh, I'm glad to see this! I contacted SmileTrain.org a while back pointing them to Squidoo's application process for non-profits to get added to Squidoo's charity list, but I confess I hadn't followed up on that to see whether they'd applied and/or been accepted yet. You didn't wait -- you made this lens instead!
Posted May 06, 2008
PaulRushing wrote...
Thanks Ryan. If anyone is looking for a worthwhile charity it is a good one to contribute to. The social implications in third word countries for children that have an cleft is huge if it is not repaired.
Posted May 06, 2008
AutoConversion wrote...
Good thinking for a Lens Paul. I wish you the best with it, and your son. We have been donating to the Smile Train for about a year now.
Posted May 06, 2008
Jennifer-Sams wrote...
I found this lens very moving and it really does deserve to be lens of the day.
Posted May 06, 2008
gurneywagon wrote...
Very heartwarming and tender. You did a great job, dad. 5*
Posted April 27, 2008
Doctors and Hospitals
- 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.
