Help please

[G.L.]

Hello. I was told earlier this week that our unborn child has a bilateral cleft lip and pallet. I am 19 weeks pregnant. My heart is being torn out. I am over 40 years old and this is my first child. Is there any words of advise out there for us.

[Anonymous]

I would like to invite you to Cleft, Chat and Smile mailing list. CCS is a cleft lip and palate support group for parents, teens and adults. To subscribe: <a href="mailto:cleftchat-subscribe@topica.com">mailto:cleftchat-subscribe@topica.com</a> Our list is open to all to freely express their feelings, get support and to learn in a positive environment.

[Carol]

Hi, I have a daughter that has a unilateral cleft lip and palate, she is now 11 years old. I know how devastated you must feel right now. Beleive it or not yu will do fine! You have the opportunity to research this now before your baby arrives. There is so much being done now for children with clefts! You might want to check out Widesmiles.org, they have an e-mail support group and I know there are families on there now that have not had their babies yet and the cleft was picked up on ultrasound. Plus you get all the support of people that have already gone through this. Good luck with your baby and congratulations on your pregancy!
Carol
You can e-mail me at Caroldove@aol.com

[Jen]

I understand where you are coming from and I am very sympathetic to what you are going through. I was born with a unilateral cleft 23 years ago. I am currently pregnant with my first child. At 20 weeks we had an ultrasound to rule out cleft and the test couldn't do that. I am currently 24 weeks pregnant and my follow up ultrasound to check again is in two days. I have been going through the range of emotions for the last 4 weeks waiting for this ultrasound. I know how devasting it was to hear that my daughter could possibly have a problem and I knew it could happen to me.


My family has rallied around me the last 4 weeks. They have been my life line. Your support system of family and friends will be vital during this time. Don't be afraid to talk to people, your doctor, anyone. If you think it will help you, see a counselor. I plan to if our daughter does have a problem. I know that there are issues that I am dealing with that my husband can't understand no matter how wonderful he is, and I know that when she is born, I can't be worried about how I feel about it. I have to totally devote myself to her and the things she needs done. Talking about it is the only thing that will help.


Keep in mind a few things that I have had repeated to me over and over again the last few weeks. First, this is NOT your fault. This is very important to remember, but easier said than done. You will love your child no matter what. Second, things might seem tough right away but I can all but guarantee you that your child will be okay once everything is done. There are children who are far worse off in life than children with cleft. Your child will have all of its fingers and toes, it will walk and talk like every other child. Third, consider yourself blessed for being able to have a child.


I am sorry this got to be long but I just tried to write what I have been feeling for the last 4 weeks. Know that there are other people dealing with this problem and trying to face it. If there is anything else you need please post another letter and I will respond.


Jen

[Anonymous]

I am an adult female who was born with a bilateral cleft lip and palate. I can answer whatever questions you may have about what it is like to grow up with a cleft. I can give some insight as to what else could have been done by my parents, family, teachers, etc. If you would like to see an "after picture" to alleviate fears of what the outcome will be, please let me know. my email address is
trisha_85476@yahoo.com


And last, but not least, congratulations

[Vicki]

We found out at 30 weeks that our baby (our first, I am being induced Tuesday the 18th)has a cleft lip and probably cleft palate. Our hearts were torn out. I cried for a week straight. After that I started researching how to help my baby and started feeling better. Eventually I realized that in the realm of things that could go wrong we are lucky. Clefts are repairable and yes, life may be a bit tougher but our baby is healthy both mentally and physically. We could have gotten much worse news. We are now at peace with whatever comes our way. Nervous about our pending new arrival but still excited and most of all at peace.
-Vicki
PS- walk around a childrens ward in a hospital and believe me, you'll feel better.

[G.L.]

Thank you to each and every one of you who responded. We are seeing a medical team tomorrow, July 18th to discuss our options. My husband and I have a wonderful relationship, The past few days have been a very difficult strain on both of us. My husband has 3 other perfectly healthy children from a previous marriage, who he supports financially. This baby was unplanned and therfore, he had been less than receptive from the beginning. I appreciate his honesty but it does make things that much more difficult. I thank you all for your words of encouragement and for taking the time to share your emotions. I will be in touch soon.

[G.L.]

God Bless you and your new child. You are so brave. I wish you all the best.

[Cheryl Anderson]

Dear G.L


My daughter is 16 now. Her name is Kristin Joy Anderson. Read right to left, her name reads:


Joy in Krist


She has been nothing but pure joy to my heart. My eyes fill up, even as I write to you.


We did not know that Kristin would be born with a unilateral complete cleft lip and palatte. It was a total surprise to us.


Although I am sure I could write extensively explaining and describing the pain and anger I have endured as a mother during these past years, I am sure it is nothing compared to the pain and anger my daughter has experienced.


But what is love with out anger and pain?


She is a bright, articulate, sensitive, caring young lady. One of the most beautiful by far.


The joy of knowing her, having the pleasure of her acquaintance, seeing her move through this world and how she touches others lives, is a blessing I can never repay.


A nurse said to me when Kristin was born, ` how trusted you are by God, to have been entrusted with the care and nuture of such a sweet child'.....


I only hope I have been trustworthy.


Best of luck!

[roisin]

hi
g.l. I don't know you at all I probally live in a completly differant country as you I'm 12 with a cleft palete, whatever you do don't keep he or she in the dark ,tell the kid all about it as soon as they ask or a week before they go to school so if any kid teases them or asks why they speek funny they can set them straight, don't make all the decissions yourself include him or her don't make a fuss about it treat like normal kids when they come out of surgery say how brave they are and by them some sweet or a small toy don't spend to much always reasure him or her, don't just be a perant be one of there most comferting understanding best mates him or her have for as long as you can.I hope you take at least 1 bit of my advice. luv roisin

[Mitchy]

I feel for you ... I was lucky enoough not to be told that our children were to have clefts, so we enjoyed an unworried pregnancy. But remember, this is a fixable problem. 99.9 per cnet of your child is totally healthy. You will love them so much, you will grow to understand their cleft makes them even more special. So far (my kids are 7 and 3) we have almost no negative experiences, and the pains of surgeries - theirs, physically, and ours emotionally, quickly heal. Remember, parenthood is a long bumpy ride, with many ups and downs ... don't let this problem become a major hang up.... and remember to try and put aside the cleft, and enjoy the otherswise healthy baby