New Here, Expecting in October

Children and adults with cleft lip and/or palate issues

Moderator: Moderators

New Here, Expecting in October

Postby samsmom » Thu Jul 12, 2007 8:25 am

Hello Everyone! So glad to have found your site. My name is Trish and I am expecting my second child in October, a girl, who we have found out will have a bilateral cleft lip and a cleft palate. In doing alot of research we have come up with a few questions specifically for parents of children with the bilateral cleft--first off, feeding tips? Did you exclusively use Haberman bottles? Was your child able to breast feed or not? Secondly, anyone's surgeon use prosthetics to create symmetry and roundness in the nostrils? How has your child tolerated it? We are researching physicians and specific techniques, concerned about sloping of her nose.
I'd appreciate any info you'd be willing to share and I'm sure I'll be back as the months progress!! thanks in advance.

Trish
samsmom
Member
Member
 
Posts: 3
Joined: Tue Jun 05, 2007 8:10 am

Postby heather » Thu Jul 12, 2007 10:26 am

Hello. Welcome. My son, Eyson, was born in November with unilateral cleft lip and bilateral cleft palate. We did not use the Haberman. He did exceptionally well with the pigeon nipple. The pigeon nipple has a valve that keeps the nipple full to help them swallow less air. It also works with just a flick of the babies tongue or by simply biting on it and the milk will be directed downward into the throat. I liked the pigeon because he was able to feed himself at his own pace and I didn't have to squeeze the milk into his mouth. I was not able to breastfeed simply because most cleft palate babies cannot suck anything. No prosthetics were used in his nostrils. Stints were used to keep them open and in place after his lip and nose were repaired. With cleft palate there is usually some hearing loss until the palate is repaired. Eyson is deaf in his right ear, but in a few months that will all be fixed and he will be catching up on his speech while he sees his speech therapist. If the cleft is all the way through to the gum there will be some missing teeth but that's not a big problem. Bone grafting is done later to replace the missing gum and when they are a little older they will be fitted with partials. We live close to the St. Louis area so Eyson's plastic surgeon works out of St. Louis Children's Hospital. I recommend using a children's hospital and a cleft team. Keep doing your research. You'll find that you and your child will become used to the clefts and adapt very quickly. My son thinks it's funny to blow his food out of his nose when he eats. Feeding isn't extremely difficult. He eats baby food just fine. If your PS feels it's necessary, your baby will be fitted with a plate at the roof of the mouth to help with eating. I hope I was of some help to you. Good luck and God Bless. Heather

Eyson after surgery:
http://i142.photobucket.com/albums/r117 ... egrass.jpg
Image
Eyson Brentley Van Eycke
Born 11/8/06 UCL BCP
heather
Advanced Member
Advanced Member
 
Posts: 131
Joined: Mon Aug 28, 2006 3:09 pm

Postby jacksmom » Thu Jul 12, 2007 12:27 pm

Trish, welcome to the group! My son Jackson just turned one on June 29th, and was born with a bil cleft palate (hard and soft). We do use the Haberman bottles and have been very happy with them. I would suggest trying the pigeon nipples, as they are WAY less expensive and look more like a normal bottle. Jackson also had some hearing issues when he was first born, but he had tubes placed in both ears at 12 weeks, and from then on he has passed every hearing test. He had his palate repaired in April, and after a hectic two weeks, he is now doing wonderful! His PS did a relatively new procedure to close the palate, with a Z shaped incision. He seems to think that it helps with speech issues to use that method. Since surgery Jackson has already started saying Mama, Bye-bye, and Bubba. He doesn't sound funny to me at all, and our speech therapist doesn't really see any issues. He is already almost back into the normal range for his age. There will be a LOT of trial and error right in the beginning, but each week will get easier! Try not to worry too much, and keep us posted!
Allison
Mom to:
Griffin- 6/22/04
Jackson- 6/29/06 (Bil cleft palate)
www.babysites.com/sites/astand/
Image
jacksmom
Support Member
Support Member
 
Posts: 170
Joined: Tue Nov 28, 2006 5:17 pm
Location: Birmingham, Alabama

Postby samjune79 » Thu Jul 12, 2007 3:28 pm

My son has bi CL/CP and you can see his pic on MYSPACE Page there is an album with all his surgery pictures

http://www.myspace.com/willsamantharosario

Both of his clefts were incomplete so he did not need to have the retainer to help the slop of his nose. Ok, for feeding, the hospital did try me on breast feeding but there was just no way he could latch on or get any milk out of me. I pumped for 2 week and never got much milk and didn't want to take meds but my son is on the squeeze bottle with the orthodontic nipple and he is almost 6 months old and I have him on a very basic sippy cup for some of his feedings - I'm tired of re-using disposable nipples - gross in my opinion.
samjune79
Advanced Member
Advanced Member
 
Posts: 73
Joined: Sun Apr 29, 2007 10:09 pm

Postby Augiesmom » Thu Jul 12, 2007 5:10 pm

Hi. Welcome. I too was so happy when I found this site. My son Augie was born on August 5th with a bilateral cleft lip and palate. His lip was repaired on November 16th and his palate was repaired three weeks ago using the Z shaped incision Allison mentioned. We have used and continue to use the Haberman nipples. The Habermans are expensive. We adopted Augie and he was using the habermans in the hospital and so we continued to use them once we brought him home from the hospital. He did use a feeding appliance for a few months but eventually we found that he didn't need it. When he was a month or two old we had to squeeze the formula in his mouth but he quickly figured out on his own how to get the milk out. Our surgeon did not use prosthetics in Augie's nose just a nose conformer following his lip repair. Augie does not have the sloping of the nose that can happen. He is doing really great following his palate repair although he still is not totally convinced he should be back on baby food.
augustus "augie" (born 8/5/06 BCLP)
lip repair (11/21/06)
palate repair (06/21/07)
Augiesmom
Member
Member
 
Posts: 15
Joined: Tue Feb 20, 2007 3:01 pm

Postby mia's mom » Sat Jul 14, 2007 12:33 pm

Hi Trish- my baby girl Mia was born on 5/31 with a bilateral cleft palate. I don't have much info other than re: feeding. We are using the mead johnson cleft palate nurser- its a squeeze bottle but the nipple didn't work with her. We are using the Nuk orthodontic nipple which we buy at the grocery store and babies r us. They're about $4 for a pack of two. I steam them in the microwave to sterilize them. I was told to just wash the bottle with hot soapy water. We also have the Haberman but only tried it once. When we first started feeding her, it would take about an hour to feed her an ounce. Now she can get about 4 ounces in 1/2 an hour. I pump breast milk and put it in the bottle. She can't nurse- she has a cleft in both the hard and soft palates. The doctor at the hospital and the lactation consultant both told me to put her to my breast for 5 minutes to try to see if she could latch on and for bonding purposes. She couldn't latch on at all and I very quickly stopped trying to put her to the breast. It stressed me out so much and made me feel so bad about the situation...it just wasn't worth it. I don't pump enough for all feedings so we supplement with formula. I have no advice in response to your other questions because I'm new at this too. Congratulations on the impending birth of your daughter! Sandy
mia's mom
Frequent Member
Frequent Member
 
Posts: 48
Joined: Sat Jun 30, 2007 2:04 pm

Thanks for your responses

Postby samsmom » Mon Sep 10, 2007 10:19 am

Thank you to those of you who posted to my questions, great info that we will use in the coming weeks. I have a c-section scheduled for Oct. 15th, only 5 weeks to go!

I'm from the Boston area and now live down south of Providence RI. Does anyone have experience with the cleft palate teams at either Boston Childrens or Hasbro Children's hospitals? We will be choosing between these two centers and would appreciate any feedback from parents who have used either. Thank you in advance.

Trish
samsmom
Member
Member
 
Posts: 3
Joined: Tue Jun 05, 2007 8:10 am

Postby samjune79 » Mon Sep 10, 2007 11:12 am

opps, double post
samjune79
Advanced Member
Advanced Member
 
Posts: 73
Joined: Sun Apr 29, 2007 10:09 pm

Postby mookie59 » Mon Sep 10, 2007 9:46 pm

Hi Trish - welcome to the group and congratulations on your soon to arrive BABY GIRL! I know you are very excited and can hardly wait. Only 5 weeks! I wish you both well!

I am (legal custody) grandmother to Taylor (girl) who was born 11/1/06 with a unilateral cleft lip & bilateral cleft palate. She has had 2 surgeries so far. One to repair her lip (nose stents were used for a short time) at 4 months and soft palate repair/ear tubes at 6 months.

Taylor used the Mead Johnson bottles. Which have a long skinny nipple with a cross-cut and the bottle is squeezable. She used it until her lip surgery at which time she weaned herself to a soft spout sippy cup. She still uses it. We are scheduled for her hard palate repair in about 3 weeks.

She could not nurse due to the lack of suction because of her cleft palate.

We live in NC which fortunately has two major teaching hospitals within about a 2 hours drive from us. We are very happy with the hospital Taylor was airlifted to 6 hours after her birth.

Stay strong...it won't be long. :)
Jennifer
Nanny to Taylor (uclbcp)
11/1/06
lip repair - 4 months
soft palate repair - 6 months
hard palate repair - 10 months
fistula repair - scheduled March 14th
mookie59
Member
Member
 
Posts: 28
Joined: Tue Dec 19, 2006 9:12 pm
Location: North Carolina

Postby Samm » Sat Sep 15, 2007 9:07 pm

hi and welcome. there are a great group of ppl here with alot of great tips.

Avery was born with a bilateral lip and palate. He eats by a feeding tube, inwhich is almost ready for a GI button. We are also having a swallow study done, hopefully he may be able to take the Haberman, after lip surgery.

He also is gonna have the N.A.M put in to his upper gum area to start pulling it together.

I dont have alot of answers, but if you need to talk pm me anytime.

www.samuelavery.com to see pics of the Boy, lol.

Have a great day
Avery BCLP
8/10/2007
Samm
Member
Member
 
Posts: 28
Joined: Fri Apr 06, 2007 5:36 pm
Location: Podunk, Ga


Return to Cleft Lip and Palate

Who is online

Users browsing this forum: No registered users and 1 guest

cron