What now

[matt r]

My
wife and I found out today our baby girl due on April 5, 2005 is going to be
born with a unilateral cleft lip and pallet. Needless to say, we were both
shocked and somewhat crushed. Although, I'm not really sure why. I guess
it's because I don't know anything about the defects (what a horrible sounding
word "defect"). The first thing I did was jumped on the internet to inform
myself as much as possible. I know I will have plenty of time to learn more,
but I was wondering what I should expect. I want to have some answers for our questions. We have many questions regarding feeding. We don't see how
it's possible. We also have concerns regarding paying for surgeries since we
are students and covered under public aid. We are still in shock and maybe it
is too soon for me to be seeking information, but I feel totally out of
control and it's driving me crazy. I thank you for your time, and I would
greatly appreciate any words of wisdom and experience you might have have to
offer.

[Kristin]

Matt,


Hi there. I was born with a unilateral cleft lip and palate. as well. And never fear it is possible to be fed! Anyhow I am afraid I cant offer you much parental support, but maybe insight into the emotional side etc. Im 22 and have had 6 surgeries, it sound slike alot but the last few were more elective. The best thing I can do is tell you to start looking for plastic surgeon before your child's birth. find one with experience working with clefts, it makes a huge difference! Dont be afraid to ask TONS of questions. My mom was a smart lady and did this and i have to say im pleased with how I have turned out. Also speak with dentists and orthodontists just to sort of figure out what the frist few years will entail in terms of repair work. Usually, the first two repairs are the actual lip repair and the palate, mine were both within the first year and a half. Usually this is important because otherwise muscles start forming and it is harder to repair the cleft.


Although you seem unsure about your insurance, start asking your company what they will cover, and in addition ask the doctors you speak with thier fees (often if if the doc's charge a bunch the insurance only covers what they Think it should cost!) Ive been blessed with generous Doctors as well, often surgery can be done outpatient (at least when i was older it was done thisway) which saves alot in hospital fees alone. Some doctor's let you pay on credit cards, which is also helpful.


Anyway, this is getting a bit long and i am betting there are some great mom's on here to guide you! Most of all enjoy the coming of your new little one! My mom was so worried when i was born that i would never be able to wear lipstick and have a pretty smile, she was very wrong! I feel like having been born with a cleft has helped me to be hunble, and gratefuyl for what i have and understanding of many people. Definately made me stronger as well! And from what i hear from every set of parents, they love thier new babies so much that the cleft just becomes invisible


Best wishes and feel free to email me as well
sbbrighteyes@yahoo.com


Kristin

[Jeff Alterman]

I have some words of wisdom for matt r. Though he is definitely worried that his baby girl will be born with a cleft. In all likelihood, his girl will do just fine once the cleft is repaired. There are many, many people out there who were born with just a unilateral or bilateral cleft lip only, a unilateral cleft lip and palate and even a bilateral cleft lip and palate who are leading normal lives. Thanks to ever improving surgical techniques, the repairs are often not that noticeable anymore. I know of a 20 year old male that was born with a unilateral cleft lip (right side) and a cleft palate. The surgery was done so well that you can't even tell that he had a cleft unless you look very hard! If I didn't know myself that the young man had a cleft, I wouldn't even think that he had one to begin with. One piece of advice for matt r. Pick the most experienced surgeon that you can find and quite possibly in the end, his daughter's cleft repair will be of such good quality that it might not even be visible except to the trained eye. In the meantime, I wish matt r good luck in finding a surgeon.


Jeff Alterman at alterman@bestweb.net

[Sherry]

My daughter was born with a cleft lip and pallete , she is now 10, and gets many compliments on how pretty she is, most people dont even know she has one. As for feeding they have a wonderful nipple called the haberman feeder, the baby just needs to bite down on the nipple , your Dr. wil know about these , and will most likely recommend it. As for your daughter my advice would be , to raise her with the attitude its no big deal, I have seen children whose parents turned it into something tragic, which destroys the childs self esteem. My daughter knows its something that just happened , no big deal, and that they can fix it. She is one of the most popular children in her class, she is in volleyball, soccor, and cheerleading , she loves cheerleading! Remember this is very fixable , When she was 4 days old, I had to take her to Cooks childrens Hosp. and as I was sitting in the admitting area, I met a couple who's 3 month old little girl was probably not gonna make it, because her liver and kidney were attatched to each other, right then and there , the sorry for me , sorry for her stuff ended, I knew my little girl would be alright and she is, she is beautul and vibrant , just as yours will be. God Bless, and if you have any questions you can email me at Sherry465@aol.com

[Havyns mom]

Hello, I am a mother of a baby born with cleft palate, she is 5 months old and we just had it repaired, she is doing great. Prior to surgery she was fed with the Haberman feeder, very easy to use. She had minimal problems prior to surgery. One thing I can recommend if at all possible is early repair, she has had no ear infections and did not require tubes since she had an early repair. We flew to Va. to see Dr. Rosenblum. He is a wonderful plastic surgeon, He and his partner Dr. Magee, like to repair within days of life, so if it is at all possible for you to see him I would suggest this. You are doing the right thing to do your research. I was not able to prior to birth because I was not aware that she had a cleft palate until she was born, She is a joy , don't look at it as a bad thing, just think there are worse things this is fixable. Some things are not, You are blessed, everything will be okay.
There are resources to assist you in purchasing the bottles, Or even giving them to you. I recieve some monthly from a state funded program, look into all of your options.Good luck if you have any questions email me at lrsearcyrn@aol.com

[havynsmom]

I am a mother of a baby born with cleft palate, Trust me it is very possible to feed, we use the haberman feeder, they are expensive however, there are state funded programs that give you these bottles, explore all of your resources. I know it is overwhelming, but I am a L&D Nurse and I see babies born with so many problems this can be fixed, so don't let it get you down. My baby is 5 months old and she just had surgery, we are doing fine. We flew to VA. to see Dr. Rosenblum, He is wonderful he and his partner like to do repairs within days of life,if it is at all possible get to this man.
If not your baby will be fine just remember it is fixable, your baby will be fine, and you will to, just support each other, and do plenty of research.
email me with any questions LRSearcyRN@aol.com

[Cindy]

I am the mother to a son who is 20 months old now who was born with a unilateral cleft lip & palate. We found out in the delivery room so we had to prepare more quickly.


Definitely find a team of drs to work with. YOu can look at the Cleft palate FOudnation website...www.cleftline.org to find a dr near you. I myslef live in Tx if you are in the area.


As far as public assistance, we were on company insurance when Austin was born, & there were hassels on coverage, but now we are in between jobs and being on CHIPS insurance has been a blessing for us to cover Austin's surgeries. Signing up was the longest part (paperwork) But the co-pays were lower or none and they tend to approve easier, no problem referral process...it has been a blessing in disguise.


As far as feeding or other questions I would love to help if I can, email at heckerj@ev1.net


CIndy
Mom to AUstin

[Carey]

Hi I was born with a hair lip and a cleft palate. There were times growing up it wasn't easy but the support from family and freinds helped me. I went to college and graduated. I was even married in 2001. Just to let you know my hair lip and cleft is quite visable, but I grew up telling my self that people had to love me for who I am and if how I look was a problem for them then they weren't worth my time. You said you were getting public health care well they will cover every thing. It was my choice when I got older to not get plastic surgury.
I just hope this helps and good luck. Carey

[Amy Gorman]

A month ago, my husband and I found out that our son has a unilateral cleft lip and palate. He is due on April 4, 2005, very close to your due date. The initial shock at first was overwhelming. We have also spent many hours doing research to learn more. We are also students on state medical insurance. We have looked into having his surgeries at Shriners in Portland, OR. There are only four Shriners hospitals in the US that repairs cleft lips and palates. They provide care free medical care for children born with cleft lip and palates. From what I understand it is fairly easy to meet their requirements as long as the child was born in the U.S. They have three other hospitals back east that have cleft lip and palate teams. It may require you to travel, but they provide care until your child is eighteen. I would recommend that you look at their website. www.shrinershq.org
I have not spoken to any parents that have had their childs surgery done at a Shriners hospital, I would like to. I will post a second message to ask if anyone has. I would like to keep in touch with you and your wife since we will be going through the same experience about the same time. My e-mail is amg78@comcast.net, if you would like to chat.


Amy Gorman

[Anonymous]

like to hear more from you.
my granddaughter is having her surgery done at OHSU in Portland OR. Sounds like maybe you and my daughter might have some fun sharing information.


My granddaughter was born 11/3/04 with bi lateral cleft lip and cleft pallet.


let me know if you are interested in getting in touch.

[Amy Gorman]

Yes, I would like to get in touch with your daughter. Feel free to give her my e-mail. amg78@comcast.net