Ultrasound showed cleft lip

[Darrell]

We are frightened. We are 19 weeks along due in April. We are
profesionals in our low 30's. We found out today that our child
has a cleft lip and one club foot. The palet is their and the
cleft is on one side. We cried on and off all day and are very
upset. This is our second child. Our first child was born free of
any defects and neither of us has any family history of defects.
How did this happen? We will be going to Spokane for a second
look and genetic counseling. Did we do something wrong? Is it our
fault? Will this child be teased in school? What do we do? Will
it be able to nurse?

[Anonymous]

Darrell, my heart goes out to you. I have been there. Your
letter sounds so much like our story. First of all, don't beat
yourself up trying to figure out what you did wrong or why this
happened. In our case, there were so many things that "could
have" caused something to go wrong. It could have been
anything. I finally had to realize that I couldn't change the
past, but I could make the best decisions possible for my baby.
You are already doing something wonderful for your baby by
finding out everything you can about clefts NOW. Even in this day
of modern technology, many people still do not know about their
baby's cleft until delivery. You, like us, are fortunate enough
to be able to prepare yourself. Nursing is still possible, but
until the baby is born, it's hard to say exactly how feeding will
work. Sometimes if only the lip is cleft, the baby can still
nurse. Our baby had a severely cleft palate, so sucking was not
possible for him, but bless his heart, he tried. I pumped my milk
until he was 3 months old, and then we had to switch to formula.
I fed him through a squeeze bottle. It was hard sometimes, but we
got through it, and you'd never know now what he went through.
Keep finding out everything you can, but remember this - your
baby will have a personality and in many ways will be like any
other baby, even a baby without any problems. Our first child was
not cleft affected. She was a colicky baby. In ways, our son was
easier to deal with! He was hard to feed, but he was much more
content. Depending on the age of your first child, I would
encourage you to be open about the baby's cleft and related
problems. Our little girl was 2 1/2 when the baby came and she
understood quite a lot from what we told her. She was a real help
to me in those first few weeks. I could go on, but I won't...but
please e-mail me with any questions you might have. I hope that I
can help you. RisaBush@aol.com

[Aaron's Mom]

Hi, Darrell. I'm glad you found this web-site, and I hope we
can do a little to put your mind at ease about what you may be
facing. We found out through an ultrasound exam seven years ago
that our fourth child would be born with a cleft lip and possibly
cleft palate. Like you, we had no family history of defects,and
our three other children had no problems. We had all the same
questions you have, so we can really relate to the emotions you
must be experiencing.



Before our baby was born, we searched for as much information
on clefting as we could find. One plastic surgeon in our area,
Dr. William Magee, came very highly recommended, so we met with
him to discuss strategies about a month before my due date. He
did so much to make us feel better! His attitude was simple: You
have a baby with a problem that we can fix, and we are going to
fix it. And he did -- Aaron had his first repair surgery when he
was just three days old, so right away he was on the road to
normalcy. Now he is a bouncy six-year-old with an active social
life and almost no scar. Most people who meet him have no idea
that he ever had a problem.



It is normal to wonder if you have done something wrong to
cause this unfortunate problem for your child. We had the same
question, but we were assured by our geneticist that Aaron's
cleft lip and palate defect was not our fault, and there wasn't
anything we had done that had caused it. Although I had nursed my
other children, I was not able to nurse Aaron - he did not have
his palate repaired until he was four months old. (Dr. Magee is
now doing both lip and palate repairs on newborns, however.) But
I have known women who have successfully nursed babies with cleft
lip only, or cleft palate after the repair. La Leche League also
gave me the names of a couple of women who nursed cleft palate
babies even before surgery. As far as teasing, I can only tell
you of our experience. To my knowledge, no one has ever teased
Aaron about anything involving his speech or appearance. (He does
get teased about his girlfriend, however!)



I hope this is helpful to you. You can read more about
Aaron's story (and see some pictures) in the Stories section of
this website.

[Suanne Armstrong (Marina']

Please do not blame yourself for your child's birth defects. I
know this must be a stressful time for both you and your
wife....but I encourage you to read our stories and look
carefully at the before and after pictures of our children. The
pictures speak for themselves that there is hope!! Our children
with the help of the cranofacial center are all beautiful and so
will your child. Please contact them and get as much information
as you can. Also, if insurance is a problem, please contact
Operation Smile. They also have a web site and can give you
information.



Remember, there is hope for you child...some parents get news
of birth defects that can not be fixed with surgery!



Should you wish to contact me or my husband (Jeff) please
feel free to call us at 757-627-4843.



Good luck to you and please try to relax and enjoy the rest
of your pregnancy!!

[Darrell]

I would like to thank everyone who responded to my posting. My
wife and I have relaxed a bit since the first day we got the bad
news. Reading your stories, viewing your before and after
pictures and talking to our friends has really helped. We will be
going to Spokane November 26th to have another ultrasound and
genetic counseling. We are still unsure how we will coordinate
plastic surgery as we are 200 miles from Seattle and 150 miles
from Spokane. We are also unsure as to where we will be best
served. We don't have confidence locally and thats why we will go
out of town but do not know of a good place to go. I know there
is a childrens hospital in Seattle but we don't know who will do
the best job. This is one area that we don't want to make the
wrong decision. If anyone can offer advice or recommend a doctor
to talk to we would appreciate it. We would like to have
everything lined up if it is at all possible. We think we have
good insurance, my wife has blue cross and I dont know if my
silly HMO will pick up any costs that blue cross doesn't. I will
be calling them to see what we can expect. Thanks again and I'm
sure we will have more questions.



Darrell & Lannette Stewart

[Suanne Armstrong]

I am glad to hear that you have relaxed a bit and that our
stories helped you and your wife. Please contact the Operation
Smile web site and find a doctor in your area that will perform
early repair for your child. Best of Luck!

[stmmbrown@niia.net]

Our little girl was also born with a cleft lip and all the
fears that you are having now, we've already had. She is now 4
years old and been through two surgeries. She is beautiful! No
one has ever commented on it one way or the other. We were
totally surprised when she was born this way. We also have
another child that has no birth defects. We went to a geneticist
who informed us that we just fell into that category of everyone
having a 2% chance of some form of birth defect. I'm not going to
sugar coat it and let you believe that the first year was not
horrible because it was. But, after 4 years of life, we have one
of the most beautiful, confident and popular girls in her
pre-school. We are very proud and you will be to. Good Luck!

[TnsBabe98]

This article really makes me made, normalcy? What the hell is
that? I am 17 years old w/ a cleft, and i am not
abnormal!!!!!!!!!!!!!!!!!!!!!!

[a sonographer]

cleft palate has been associated with the use of certain
medications during early pregnancy. Included are such things as
ibuprofen and many antihistamines, also prescription drugs like
sulfa, penicillin, prozac etc. For a more complete list, find a
book written by Callen, "Ultrasonography in Obstetrics and
Gynecology". See the appendices at the back of the book.

[Lorna]

Would these prescribed drugs include things like salabutamol,
(ventolin) serevent or becotide? Please let me know if poss.
LMcLean727@aol.com

[Asthmatic]

I just asked my allergist about certain medications that I
should not take during pregnancy. He said ibuprofin and
antihistimines (deconomine, claritin, etc.) are out. Rescue
inhalers, such as ventolin (albuterol, proventil) are supposed to
be safe because they are not absorbed by the the body. Steriod
therapy inhalers are supposed to be safe for the same reason, as
are most nasal sprays, but see a doctor to find out which ones.

[heather]

I would just like to say that I am well adjusted, friendly,
outgoing university student, who like your CHILD has a cleft lip
and palate. Don't worry about them later in life instill in them
a good sense of self and good self esteem and they will be fine!
That is how I got through and I tend to think that I did a really
wonderful job. BTW, normal is not cool!

[Anonymous]

Dear friend, I have a cleft lip and am too a professional. I
have a wonderful husband - and have even done some modeling. I
was hardly teased in school - I always had many friends. I am
considered a beautiful 28 year old woman (and when I was growing
up there was hardly the technology that there is today). Please
encourage your child - get excellent plastic surgeons and start
it now!!! At an early age, the face and skin heel very well!!
Just believe your child will succeed and love it like your other
child. My blessings to you!!!

[Connie Grande]

[just another mother]