Seeking Cleft Lip/Palate Parents - Escondido,CA

Congrats!

My son is 3 and has a Unilater cleft lip & palate. I found out at my 20 week u/s. We were lucky his cleft wasn't severe at all, his surgeries went great, and he's only had to have less than a year of speech therapy.

You can visit his website at http://www.geocities.com/hondagurl9201

it hasn't been updated but it has his 1 year in there, feel free to contact me anytime

T. 24
Kaden 3

M.,
The baby will have a hard time forming a suction so what I found to be best for me. My son is now 9 and he was breast feed. He is a twin and she was born fine and he to had a cleft lip/palate I would pump his milk and then feed him with a special nipple and bottle. The hospital will help you get all the supplys you will need as will your doctors. Don't stress out you will do fine. The first surgery will take place when the baby is about 6 months to close the lips and feeding becomes much easier. Hope this helps.

Hi M., I am so sorry you have to go through this challenge. I have a daughter who has many disabilites and she had a bi-lateral cleft palate. Her mouth and nose were wide open and no palate. She is now 7 years old. She is the best thing that ever happened to us. I wasn't able to breast feed because Alicia didn't have a desire to eat. She also had other problems. I pumped breast milk and fed her with a pigeon feeder bottle that came from Japan. It had a valve in it to control the flow of milk. They also have a haberman feeder bottle. You can usually ask an occupational therapist or hospital for it. Alicia had her first surgery at 3 months old. It was a great difference. She had all her surgeries at Lucille Packard Children's Hospital at Stanford in Palo Alto California. They are wonderful surgeons if you have any questions. 1-###-###-#### I hope this helps. ____@____.com

M.-

I am so glad to find other parents who have a baby born with a cleft lip and or palate.
My 8 month old son was born with a cleft lip. He was fortunate to not have the palate too.
I found out at my 20 week ultrasound and was so scared. Once i knew what to expect it was much better. When Izeah was born he was so beautiful i didnt even notice his cleft lip.
I wasnt able to breast fed him, because he could only latch on to one side. So i pumped for a few months. I highly recommend buying the dr browns bottles. I am sure you will get connected with a nurse from your city that will give you a ton of information. They can get you the pigeon nipple which fits only in the dr browns bottles and also a little white insert that goes in the nipple to make the milk flow out faster.
Izeah just used the Dr Browns bottles and that insert until after his first surgery at 3 months. He had his second surgery at 7 months. His lip looks amazing. He only had the cleft on one side of his lip and it was very minimal. His plastic surgeon is an amazing woman and I highly recommend her.
If you want i can ask my nurse how you can get in contact with a cleft lip/palate nurse in your area. She has been a life saver for me.
Lastly, please dont over worry or be scared. The surgeries are heart wrenching, but your baby is beautiful no matter what. Never blame yourself!!!
We have another son who will be 6 in may and he wasnt born with the cleft. Its amazing what surgeons can do.
I would love to chat with you and any other moms who has a child with a cleft lip and/or palate.
Please feel free to email me at ____@____.com
I would love to chat and help you as much as i can.

M.

hello...i'm a mother of two, and my husband is in the army..i read your add on mama source...my mother has 10 kids and my sister who was number 8 has a cleft palate she was able to live with it until she was a teenager and then she had surgery as a teenager when she wanted to have it, it was difficult for her to have the surgery because they had to go in the nasal cavity and cut away cartilage ,which grew back and they had to do it again a few years later, she was only able to breath thru one nostril but yes...yes she was able to breast feed she taught herself how to latch on. she did need braces and that is when she decided to go through the surgery...she had her surgery about 6 years ago and her braces were just taken off and she looks great...i just thought i'd tell you her story...shes doing great now...

Hi M.,
I am a 24 year old mother of 2 with a 2 year old with cleft lip and palete...My daghter has 3 surgeries so far...I would love to help with any questions that you might have.

In regaurds to the breast feeding, I was told that she would not be able to suck that hard. My daughter was bottle feed and was alot easier. She did not like the cleft bottles so we used the Paytex drop in bottles and she ate great after that.

Let me know if you have any other questions..I would be glad to help

I don't know where you are located, but there are some good resources at Parents Helping Parents in San Jose. www.php.com You can contact them and they can connect you with many local/regional resources as well as other parents who have some experience with the same challenges.

M., I was born with a cleft palate and had more than 3 surgeries to completely fix it. The last one was almost 4 yrs ago. I am 39, I was born with a Genetic Disorder called Stickler Syndrome. Have you been checked by a Geneticist? They can point you the right way, I have also heard of special bottle nipples for cleft babies. Check online for cleft palates. Or go to the following website which has more answers than I.
WWW.Sticklers.org. They are a great bunch of people and they have a list serv that you can join much like this to get specific help. Hope this wasn't too much info.
W. H.

Hi, I just had a question. I am 24 weeks pregnant also. How did the Dr's determine that your baby had a cleft palate? I was told that you cannot detect that sort of thing.

My son, Angelo, was born with a complete bilateral cleft of the lip and palate. He has been a patient at the Craniofacial Clinic at Children's Hospital Oakland. They are the one who handle his case as far as appointments with his surgeon (who, I might add, is wonderful), dentists, and scheduale the surgeries. Angelo had his lip repaired when he was 6 months old. It was actually a outpatient surgery and I was able to take him home that very same evening. He had to wear arm restraints for 2 weeks to keep him from pulling his stitches out. He was 10 months when his palate was repaired and this that time there was a 4 day hospital stay for the both of us, because I wasn't leaving that hospital without him. The nurses were very understanding and we got lucky, the other baby that was sharing the room with my son was the same age and there for the same thing. Angelo's now 8 and he is absolutely beautiful (he hates it when I call him that cause he says girls are beautiful, boys are handsome). He does have another surgery coming up soon for a bone graph to put a piece of bone in his top front gums and to close off the rest of his palate, which is only open tiny, tiny bit. The only real problems that Angelo's had are he has mild hearing loss in his left ear, but it doesn't require him to wear a hearing aid, and ear infections, and he gets a lot of those. When he had his palate repaired his surgeon also put tubes in his ears, but those came out a long time ago, and without the tubes to drain it out, the fluid that he gets in ears just sits there, and until its actually infected the doctors can't do nothing about it. But other than that, Angelo is great. I am a very lucky mother. His scars are just reminders of strong he his and they are a part of him. And I always tell him, if you didn't have them, you wouldn't be who you are, they add character.

C. F

What insurance do you have? Kaiser? I could not breast feed my daughter when she wqs born because of her lip and I know there are special bottles for babies with Cleft palates. The surgeries are not bad its when they grow up and start asking you questions as far as why they are different and all that that hurts...I am going thru a tough time know cause I dont now what to respond to her...my daughter is beautiful to me and thats what I want to instill in her but it is hard especially bieng a girl. When they go through there surgery they have to be a minimum of 10 pds in weight and after their surgery for like two weeks their hands are tied down so they wont touch there mouth and you have to tube feed them until they can suck on there own

Hi M.,

And welcome to the club! My baby was born with Cleft lip and Palate. His first surgery (lip repair) was when he was 3 months. And will be having his palate repair in about two months. Unfortunately I was not able to breast feed but have heard that many moms are able to!! i used a pump for six weeks but that became very tiring and my nipples started to hurt really bad. But like I said many other moms have been able to breat feed. It just takes a little more patience! My son is seen at the Children's hospital in Kearny Mesa and I love them. They are so nice and answer all questions that you have!!

Hi
My son was born with a cleft lip, not a palate so I know that their are some major differences. Breastfeeding was supposed to be possible but it just didn't work for us so I pumped and nursed. After his surgery he stopped nursing completely and I pumped fully. I did not know about the cleft before he was born so I guess I never had time to worry about it. Do you know if it's a lateral or bilateral. My advice is look for a group in your community. We have a support group here and my son actually goes in front of the "Board" on Friday for his 2 year old evaluation. Lucky for us Spokane has a terrific system here. Our plan was to find a Dr we were comfortable with and someone who was good. Afterall it's his face! We are from CA and were going to fly him home but one of the best plastic surgerons is here in Spokane so we didn't have to go anywhere.
I don't really have any advice. It seems like the end of the world in the beginning but my son turned two last Monday and the surgery is barely a memory (longest day of my life that day) and life is normal. We are worried about his speech but we'll work through it and really has not been a huge event. Like I said tramitic in the beginning but everythign is great now.
Email if you need anything or just want to talk about your feelings. I know the biginning was very emotional for me in trying not to blame myself or have any feeling of guilt like I somehow did it. It is there face and I know the worry of your child not looking like others, so write anytime.
Good Luck & God Bless
Kat