First Time Parents

[Jodi C]

Our baby girl was born on Thursday, May 28th with a cleft lip.
The cleft is unilateral and involves only a small portion of her
gum line. This was something that we never could have imagined
happening to her. She is scheduled to have her repair done in a
few weeks when she weighs 10 lbs. Any advice?? There hasn't been
a day that has gone by without deep concern about her future.

[Lori C.(tlcarst@rconnect.]

Hi Jodi! Congrats on your little girl! She's brand new!! I
remember those days very well! It's a shock, isn't it? My son,
Spencer, was born 2/26 with unilateral cleft lip and palate. His
is what they call "moderate" so it must be pretty bad.
His lip and nose will be repaired on June 23rd. I have found a
really wonderful group of people thru e-mail who help me daily.
If you're interested in getting some ANSWERS and want to vent
some feelings, e-mail me and I'll tell you all about it. It's
really been a salvation for us! Once again, congrats and give
that doll a kiss from us! Write soon! Lori Carstensen(from Iowa)

[Laurie]

Hi, My son is almost 4 and was born w/ unilateral cleft lip
and a cleft in his gum line(aveolar ridge). His lip was repaired
at 3 mo.and recently had his scar (which was minimal) revised.
Just to encourage you, no one usually notices that his face isn't
perfect. He is beginning to wonder about it, but the revision
gave us an opportunity to explain it to him. Remember that it is
hard now, but their are lots of resources to help and if you have
a good surgeon, she's going to be fine. I know it is hard to
believe that now, but it's true. Read all you can and get
educated and you'll be okay. good luck.

[Nena]

I know I'm jumping a bit ahead of where you are, but my
daughter is 10 years old, born with a severe bilateral lip and
palate. To let you know how this looked if you haven't seen any
pictures, she had two slits going up both sides into her
nostrils, her gum that contained her two front teeth touched her
nose with a tiny piece of lip on it. She had no roof to her
mouth, only the bone going down the middle--nothing in the back
(soft palate). She was our first and a complete SHOCK. The good
news... she has had four surgeries for her cleft, has had
numerous orthodontic work done and she looks wonderful !!!!! She
has no speech problem whatsoever, never any speech therapy. Some
people who don't know her asks if she fell and split her lip.
Although she has a way to go, she may want to have cosmetic
surgery for her scars and to revise her nose, she is a very well
adjusted child who accepts who she is and how she looks with no
questions. We have had a philosophy since she was born, treat her
like any other child--because being our first we didn't know any
different way!!! We have a 6 year old daughter who does not have
a cleft. I could go on and on, just wanted to let you know that
it will be okay--really. One day at a time.



You're asking the same questions and having the same feelings
that I did, I just wanted to know that it was going to be okay,
and it is. So if we're not too far ahead in age for you, feel
free to e-mail me with any questions.



Nena. ngile@yahoo.com

[Jessie]

I too have a baby girl who was born with a unilaterial cleft
lip and palate. She is now 18 months and has had three surgeries.
I know the concern that you feel. It is very hard but is
something that is necessary. My prayers are with you and your
family. If you have any questions, I would be happy to share with
you. Please email me at tiffnsteff@earthlink.net.

[Debbie Dickson]

It is scary at first. My son, Jacob, was born on June 12, 1995
and had his repair surgery done at 9 weeks old. At first you
think that maybe surgery isn't needed afterall, he probably could
function normally in society just the way he is, cleft and all.
However after the urging of many people and the realization that
people can be cruel, my husband and I decided to go ahead with
the surgury. A week after his surgery I had Jacob's pictures
taken at a studio and you could hardly even tell that he had a
scar. He's 3 years old now and needs one more surgery before he
turns 5 but most unilateral clefts can be corrected with just one
surgery. It's the best thing that you can do for your daughter
(having the surgery). I mentioned earlier that people can be
cruel.....the actual saying is that "kids can be
cruel", I actually found that the kids were great about it,
it was the adults who were rude. Best of luck to you and your
family. While it is extremely difficult to give up your child to
the doctors for surgery, know that it is the best gift that you
can give your daughter.

[Debbie Dickson]

Hi again Jodi! Just wanted to let you know that if you feel
the need to talk about anything, please do not hesitate to
contact me at ddickson@boyneclarke.ns.ca



I remember how overwhelming everything was at first and how
people were afraid to ask questions or talk about "it".
If you are feeling the same way and just need someone to talk to
who understands just send me an email.



Bye for now.

[Anonymous]

Hey, just wanted to let you know that everything will work out
fine...i am a 19 yr old female whos gone through all the
surgeries. Sometimes its tuff to deal with, but i would say that
it has made me a stronger person.

[rkryan@earthlink.net]

Hello, my name is Karen Ryan, I'm 23 and a first time parent.
I would like to share with you our blessing. On November 4, 1998,
my husband and I were blessed with a beautiful baby boy, Nathan
Daniel Ryan weighing in at 8lbs. 8oz. 20 inches long. It was to
our surprise at the time of birth that our son had a cleft lip
and palate. We did not have any idea before hand. He was also
born with amneotic bands wrapped around his fingers. All
abnormalities are correctable. I would like to hear from others,
their experiences and how they made it through their difficult
times. Please feel free to e-mail me at rkryan@earthlink.net

[Younger sister of cleft f]

My mother gave birth to my sister at your age. I came along
two years later. My sister and I are in our thirties. Your son
will face many obstacles in life, but with love will manage and
thrive. I know you hug and kiss him every day. He will need this
throughout his life. His future brothers/sisters need to be part
of the support system, especially as friends and peers come into
the picture during school. The reality is that your family is
going to be the reason he will make it. My sister has dealt with
many negatives such as teasing from other kids and being dateless
in high school. She managed to survive, finished college and is
working. Still, the issues are there. Just love him, keep your
expectations the same for him as your other children and everyone
needs to be there for everyone as you deal with life. Blessings,
Lori

[tweed1@frontiernet.net]

My daughter was born in 1991 with a unilateral cleft and small portion of her gum involved. Eight years later I have just found this wedsite. She is a beautiful, well adjusted 3rd grader who wants to know why she must have the bone graft surgery this summer since God made her this way and she LIKES being different?? We are having the surgery! Knowing different won't be acceptable to her come 7th or 8th grade! She had the lip repair at 10 weeks/10lbs. We have since moved and are looking for a new team in the NY area. We have started orthodontic treatment turning her front teeth around straight (she was the coolest kid in 2nd grade because she got braces!!) They also expanded her palate in preparation of the bone graft this coming summer 2000. PLEASE feel free to email me for more information or to talk. This website has been so informative I can't believe I didn't know about it until now. God bless all parents and children with Clefts and may you be as blessed as we have been.