New here!!... and have my story!

[SONIA]

Hello to everyone!
I cannot believe that I found this forum.
I look the pictures of those babies with clefts and I cry... they are so innocent to go through surgeries..... I pray for all of you.... and my little girl!
This is my story...
I gave birth to my second baby (a sweet little girl) at 4th of June, we had planned this labor with cesarean (as I had my first with cesarean too) at 6th of June but water broke earlier.... Me and DH were so happy that our little new baby decided to come earlier...
I had my epidural and in a few minutes a girl showed up!!!!!!!!!!
It was soooooooooooo small, the nurse showed her to me and took her immediately to the pediatricians. I realized an anxiety in the room but however I asked what is going on they did not tell me anything.
I asked if my DH saw the baby and they told me that he is at the Docs room to see her.
When my DH went off that room I thought we would collapse... The DC showed him the hole that the little baby had in her mouth. She has a Cleft Palate.
Believe me we had NEVER heard about such a thing NEVER we new nothing about it either our parents. WE WERE !
The happiness we had (that our little girl decided to come earlier ) was transformed at... how can I say it... disappointment and this was because of our ignorance .
Docs explained that these situations are common and there is a complete repair to the palate.
The days that came made me soooo strong... Our families and friends were looking the baby... as if they were trying to see smthg. I got very upset and... selfish... in order to make me feel better they had lost their smile.... they didn't bring me not even a single flower at the hospital NOTHING!!!

"No way" I said to myself "I love my baby no matter what" and told to my DH (who although had been informed was still socked) "I want some sweets & candies to treat the people that will come to see me, we had a baby and I want to be happy I AM HAPPY!"

I decided and demanded from our families to forget the situation until the surgery, as the baby was gaining weight and eating properly with the special nipple!!
We will have the surgery done when she will be around 6months. I adore her, I love my children very much I would do everything for them to be happy and I will!!!!

Thank you for your time, I look forward to your comments or tips for this surgery that my girl will go through!

[gc0447]

Hello.

My name is Georgette Couvall (Dr. Salyer's patient: http://www.craniofacial.net & http://www.worldcf.org). How are you? Here are my Personal Story & Before and After Picture links:

http://www.craniofacial.net/hypertelorism.htm (Anopthalmus with Frontonasal Dysplasia)
http://www.craniofacial.net/testimonials.htm (Georgette, Patient)
http://www.worldcf.org/support_groups.cfm (Craniofacial anomalies)
http://extratv.warnerbros.com/cmp/spotl ... 06_09a.htm
http://www.cleftadvocate.org/ff0104Georgette.html

Welcome to the group. I'm from Illinois. If you don't mind me asking, where are you from? Just wondered. I hope things are going good for you.

Sincerely,

Georgette Couvall
georgettecouvall@hotmail.com (Email)

[hatchedk]

Welcome!
I found out about Andy's cleft a few weeks before birth, I can only imagine how challenging it was for you and your family in such an emotional time. Thankfully your mother instinct took over!
We have only done a lip/nose surgery so I have no advice on the palate surgery other than it sucks but we know we have to do it!
Andy's website is katieandyhatch.blogspot.com if you want to read how our first surgery went...
Karen

[SONIA]

Thank you both for your replies.
It is really good to feel that there are people who understand my condition.
I am from Greece Athens.... too far from USA but so close to many people with the same problems!!

thank you again for your support!!

[gregory]

Sonia,

Congratulations on your new baby girl and thank you for your story. I understand how you feel and sympathize.

Here is a briefing of our story: http://www.cleft.org/families/theodoros.htm

Please feel free to contact me or my wife if you would like to discuss; contact details are included in Theodore's story page.

My son was operated in 1997 by William P. Magee, Jr., DDS, MD, plastic surgeon and Founder of Operation Smile (www.operationsmile.org), at Children's Hospital of the King's Daughters (CHKD) in Norfolk, VA. It was the time that Dr. Magee, several professionals, and families started the Smiles Craniofacial Support Group.

In the past, we were contacted by Alexander C. Stratoudakis, MD., F.A.C.S. who is a plastic-craniofacial surgeon and had started a parent support infrastructure in Greece in 1998. Here is his email address: astrat@hol.gr. You may want to contact him.

Good luck with your baby girl's surgery. By the way, when is she scheduled?

Gregory (father to 9yoB, PRS)

[SONIA]

Thank you very much for your reply Gregory.

I got so emotional with your story... you went through so much anxiety!
Your son is a real angel!!!!

You mention that his first surgery was only days after his birth.. We were told that we will have to wait until she is six months to have her surgured.
Since then we feed her with a special nipple for cleft palate.

Now she is 4months and we decided to take her to the first cleft specialist tomorrow so that we have a first picture of how big her problem is!

I have read alot about cleft palate but do you think from your experience that there is something I should know or ask the specialist at this first appointment??

Thank you very much once again!

[mazimono]

Congratulations
on your new baby girl!! We have 3 boys and 1 girl now. Theodore is 9 1/2 years old
now and only has a trach scar. It is a difficult situation but we had great doctors
and nurses in Virginia. Theodore had his surgery at 4 days of age so I would ask
the doctors to perform the surgery as soon as possible. I know that many doctors
still do not perform surgery until around 1 year of age. Dr. Magee in Virginia
performs as early as possible and he does wonders with little skin to work with in
the palate area. Theo was able to bottle feed normally with a trach in place. Does
your little girl have a cleft palate only? I, myself, was born with a cleft palate
only in 1964 and my surgery was done at 13-14 months of age. My mother fed me with
a syringe for the 1st year. You see, this late repair is rather out-dated. If
your little girl has no breathing isuues or other medical concerns, I would question
the doctors about early repair and find one who does early repairs. It also helped
me to talk to other parents so I knew what to expect after surgery. I was not so
prepared after Theo's trach surgery. It can be traumatic to see your baby after
surgery. Please feel free to call me if you need to talk to someone. I have spoken
with many moms and dads over the years who just need someone to listen or
reassurance. It does help to talk to someone who has been where you are now.

Good luck to you and your family and we will keep you in our prayers.

Mary Ann Zimonopoulos

[tkebino]

My son EJ(16mths now) was born with a cleft of the soft palate only. He was 2weeks old when it was found. He choked about 1hr after eating and I freaked out and took him to the DR for piece of mind. I cried the whole hour home from the DR office. No one in the hospital found it nor his peds DR. I did not have nipples or bottles and spent a lot off money until we found one that work. I have changed Peds Drs right after because that DR was a family practice Dr and knew nothing about clefts. He sent me to the ENT who in turn sent me to the plastic surgeon.

It is a scary time and a learning time and I promise you will get use to the all the "issues" that come with this.

Also EJ did not "talk" like my daughter and the plastic surgeon said it was because of the cleft. He "talked" a little but once the palate was repaired at 10mths he was fine and is right on track. he may need speech therapy and the plastic surgeon will send us to someone to check him.

I do miss seeing that hole when smiles because it was a big part of who he was. I miss the way his cry sounded because it changed after surgery.(i was advise by someone on here about that). all in all i am glad he was born the way he was because i found I am stronger than i thought.

If you have any questions please ask the knowledge on this sight is awesome.

welcome to the group.

[SONIA]

Mary Ann, tkebino,

Thank you a lot for your replies.

My girl has only cleft palate but I feed her with the special nipple and she hasn’t got feeding problems except some milk that may come out of her nose sometimes.

3 days ago, we went to a cleft specialist who told us that she has a hard & soft cleft palate and he wont do this surgery earlier than her 18th month!!!

Me and my husband were shocked... we think it is too late. As you mention Mary Ann, we too believe that the operation has to be done the sooner so that she wont have problems with speech (or have the least possible) like EJ.
Our son talked when he was 1yo, what if our little girl tries to speak before we have her operated at her 18th month?

The doctor said that if she has such problems after the op we will go to a speech specialist.

WELL if she needs it we will take her but what if we can avoid it....

Did Theodoros or you Mary Ann had any problem with speech after the surgery?

We will meet two more doctors, the one that Gregory mentioned Mr. Stratoudakis (we were told that he is the top here in Greece) and one more at an "only pediatric" hospital which has special dept for such surgeries, we hope to find more up to date methods....

I don’t know what to say, maybe I am exaggerating about the time the operation will take place, since my girl doesn't have feeding problems!

I really thank you for your time & support.
Look forward to your replies!

Regards from Athens,

[mazimono]

Hi, Sonia,

I did not have any speech problems associated with my cleft palate but my cleft was more minor than Theodore's cleft. Theodore's entire soft palate and 1/3 of the hard palate were missing. He did not have major speech problems as a toddler but he had trouble pronouncing the letter "s" and blowing bubbles. I do believe that 18 months of age is too long to wait for a repair and you are wise to consult other doctors. Dr. Magee, Theodore's surgeon, did wonders repairing his cleft at only a few days of age. I know many doctors want to wait in order for the skin to grow so the repair is easier--more skin to work with. Good luck and let us all know how things are going. Feel free to call or e-mail me if you have any other questions.

Best Wishes,

Mary Ann Z.

[sodapop]

Hi Sonia

My name is Maria and my daughter Vada was born with a unilateral left sided cleft lip and cleft of the soft and hard palate. I knew she would be born this way when we went for my 19th week ultrasound so I learned a lot before she was born. I think that was easiest because that way i wasnt upset about it and could just celebrate my beautiful baby girl! After she went for her first cleft consult, i asked the doctor why they didnt want to operate right away and he said it was riskier for a child under four months to go under anesthia and that after four months the risk dramatically decreases. She will have her lip/nose repaired at 4months and her palate repair before one year. Her doctor said they like to do the palate repair before they start fully start talking so that when they do they make the right sounds and might be able to avoid speech therapy. She has a team of doctors at Children's Hospital in Seattle, Washington. Where are you located at? Have you gone for a second opinion? If you dont agree with one doctor you could always go for a second opinion. You know what is best for your daughter and if you dont agree with what they want to do, i would suggest you explore all your options. I definetly agree that you wouldnt necessarily want to wait too long because you want her treatment to be minimal and not make her go through anything she doesnt necessarily have too but that is just my opinion. Good luck with everything. God bless.

Maria