When did you find out?

Children and adults with cleft lip and/or palate issues

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When did you find out?

Postby wcs40110 » Wed Nov 21, 2007 9:41 pm

Just wondering how many people knew their baby would have a cleft and how many people it came to as a surprise.
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Postby ssmehyl » Thu Nov 22, 2007 10:12 pm

We found out at 30 weeks. Saw it on the 3d ultrasound.
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Postby samjune79 » Sat Nov 24, 2007 4:00 pm

I have a ULCL/CP and when I was 25 weeks pregnant I told them I wanted to check for it and that is when we found out that our son had it too. We had a 3D ultrasound done. We also got one done at 30 weeks to see if we could get a better look. For what we could see it was a ULCL complete but when he came out he was BiCL/CP incomplete.
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Postby Z-Pup » Sun Nov 25, 2007 7:50 am

Well at our 20 week US the tech said she "thought" she saw it. The doc was not in the office that day, and couldn't see it on the screen. So we came back for 2 more US in the next few weeks trying to let the Doc see his face....but of course each and every time he had his hands in front of his face, and we'd try to move him and he was having NONE of it LOL.

So we went into delivery knowing that it was a GOOD possibility of a c/l...but with no positive yes/no answer. But I knew in my heart of hearts that he had a cleft lip (at least) and I was fine with that....that is not to say that after that first US I didn't' bawl my eyes out. But I am SOO very glad I had that time before he was here to figure out what the hell a cleft was! I had NO clue before he came into my life.

I had an Emergency C-Section, and the first question I asked the doctor as he was pulling him out and I had hear him cry was "Does he have the cleft?" The doc was still cleaning him up and hadn't turned him over to face him yet so he told me to hold on...and I said "Oh your fine, it doesn't matter to me either way, I was just curious!"....so I guess that kinda awed the doc....but he did say "Tia...yes he does have a cleft"....and I can remember smiling and was so at peace with it....the waiting was the part that was killing me....but we knew now, and can so handle it. And OMG was it love at first sight!

My family that was at the hospital also knew of the possibility of the cleft...so when the nurse was wheeling him by the L&D waiting room on the way to the nursery, she stopped so that my fam. could see him...and everyone ooohed and ahhhed over him....it surprised the nurse so much, because she didn't know everyone knew and was trying to protect him and us from foul ppl.

I would NOT change anything about my son...he is our LIGHT. He is a WONDERFUL bright child! he has brought so much to our lives.
Lots of Love,

Tia
Zachary 9-21-06 Unilateral Cleft Lip & Palate lovingly called Z-Pup after Daddy, who btw is O-Dawg. :)

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Postby heather » Mon Nov 26, 2007 4:11 pm

I found out at 24 weeks. I was sent to St. Louis Children's Hospital for my ultrasound because they were checking my son's heart. I have a 5-year-old that was born with a congenital heart defect. They were searching for any abnormalities in the heart and the tech said she saw a "shadow". So they scheduled a 3d/4d ultrasound and found that it was definitely there. The cleft palate was a complete surprise because he wouldn't cooperate during the ultrasound to be able to tell if it included the palate or not. Unfortunately it did and it was bilateral. But I wouldn't trade him for anything. He is absolutely perfect in my eyes.
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Eyson Brentley Van Eycke
Born 11/8/06 UCL BCP
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Postby Linda S S » Mon Nov 26, 2007 5:39 pm

My sister and B-I-L found out when their daughter was born. They had no ultrasounds done. She was born at home with a midwife.
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Postby mellyott » Mon Nov 26, 2007 6:34 pm

We found out at birth. I think I can see it on the ultrasound pictures, but they are hard to understand.
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Postby wcs40110 » Wed Nov 28, 2007 3:17 pm

Mine was a surprise. They doc told me she had a cleft lip and it was a sign of a cleft palate and I had no idea what they were talking about. then found out we have a family history. I just get scared sometimes as to what she has in store for her.
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Postby Samm » Thu Nov 29, 2007 9:20 am

we found out at 5 months, we were told he had a unilateral, but couldnt see his palate.

when he was born at 39 weeks, he had more extensive damage, but it did not matter. the things they do now with surgeries, the most important part was that he was healthy.

we did our searches, found our surgeon before avery was born.
Avery BCLP
8/10/2007
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Postby mia's mom » Fri Nov 30, 2007 8:14 pm

when she was about 7 hours old. She couldn't latch on. The lactation consultant said "you know, let me have the doctor check on all that mucous in her mouth". Then she came back without my daughter and, very dramatically, said "the doctor wants to talk to you about mia". That's when I found out about her cleft palate. I wish I knew before. I was devastated. It was tough handling it at the hospital.
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Postby mrobida » Sat Dec 08, 2007 1:24 pm

I had my daughter around 8 pm. The nurse found her cleft palate in the hospital nursery a couple of hours later after I had already tried nursing her without success. My husband had already gone home for the night. I had to call him and tell him the news. They couldn't find the Haberman bottles and the pediatrician said that as long as her blood sugar was ok that she could go without eating for the first night. She was crying so bad that the nurses fed her with a syringe. They were wonderful and very helpful. But it would have been nice to know ahead of time just to prepare for the feeding issues, etc.
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Postby Bailliejo » Tue Dec 11, 2007 7:07 pm

I found out at birth. We had 3 ultrasounds done during my pregnancy and the dr said she didn't see anything. Very big shock. We are very scared to have more kids, worried they will have it to. But you find the strength to get through it.
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Postby sunshine_81 » Thu Dec 13, 2007 12:35 am

I found out the moment i woke up from my c-section. My girl had cleft palate,hence couldn't be detected from the scan.

I was shocked and depressed when I first found out about it and was emotional for 3 months before it finally sinks in..
We looked for the cleft team the moment we left the hospital cos I had difficulties nursing my girl.

Be strong and be there for your little one, despite the shock. Because they are perfectly dependent on you. Be assured that everything will turn out fine. Don't be afraid to look for support and assistance from your cleft team & your family.

Take care & be strong..
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