Any mom's out there with a little baby who was born with a cleft lip and or palate?
Amber - posted on 05/07/2012
Our third son was born with a unilateral complete cleft lip and a bilateral complete palate. He was also born with hemifacial microsemia...he right ear and jaw bone did not develop like the left side. He is ten months old and we have had two surgeries so far to repair his lip and nose. He is schedule for his palate repair on August 3rd. Our journey has been hard and emotional but I would not change a thing. We have at least four more surgeries to go through before everything is all corrected. The best advice I can give is to educate yourself and to not dwell on it (believe me it took quite some time for me to be able to do that) Jacob is a happy healthy baby and everything that needs fixed is just cosmetic. He is a champ and has taught me more in the last 10 months that I could have ever imagined.
Mariel - posted on 05/04/2012
yes i have an amazing support system. We are living with my in laws. so we dont have to pay mortgage or anything so that helps. My son is also on nj family care which also helps. Its still very hard though but I wouldnt have it any other way. You are also in my prayers. Also I saw the picture of nolan and he looks adorable!
Allyson - posted on 05/03/2012
Oh, goodness, I got that comment of "Good that you kept him" too... I just am lucky with people out there that cruel and selfish that my son was born to me and not one of them. He's got such an awesome personality already and a purpose in life. He has blessed so many people, and I love him more than anything. Can't imagine life without him.
I'm sorry about all those surgeries. It's tough to knowingly put your little one under anesthesia over and over again. I know it is for the best, but the risk is always stressful. He's had two procedures so far, one scheduled for next week, one for two months to help construct his eyelids a little better, and then we move on to the cleft and his ears all before he is school-aged. I'm just lucky we have good insurance, to say the least! We also swallowed our pride and got SSI and food stamps. We just couldn't do it otherwise. My husband had to quit his job so that he could work out of the home, but the income for real estate appraisers is sometimes nothing. Do you have a good support system around you? Are you making ends meet and all of that? I hope so! I wish you all the best.
Mariel - posted on 05/03/2012
my son is now 16 months old. when i was pregnant with him in a ultra sound we found out that he was going to be born with a bi lateral cleft lip palate. I then found out after the ultra sound that the cleft lip runs in my family. We aren't sure about the cleft palate or club feet which my son also has( but sometimes they all run hand in hand) So far he has had 3 surgeries in his short little life. He has had the surgery for his tendant in hill because it got tight, he had the surgery to fix his lip and he had the palate surgery. Unfortunately the palate surgery didn't work and his hard palate opened up. Which means he is going to need to have the palate surgery again. Butt all in all he is a healthy baby, and very energetic and happy. It's hard but I wouldn't change anything about my son. It just gets me mad because like you I also got the stares before my son had his lip surgery. People would always say o you decided to keep him. Like I would have an abortion because my son was born with challenges. I can't imagine my life without him even though it is hard. It was nice to hear from you allyson I don't really talk to many moms.
Allyson - posted on 05/02/2012
Yep. My son has Treacher Collins Syndrome (a rare genetic disorder where there is facial underdevelopment--especially in the jaw, ears, eyes and then there are no cheekbones to speak of). Because of his jaw being so small, his tongue didn't really have a place in his mouth, so it stuck upward creating his really dramatic cleft palate within. Because of his tiny jaw, cleft and the fact that he chokes on his tongue, we had to put in a tracheostomy (a hole in his throat to breathe in) and a G-Tube so that food would go directly into his stomach since he couldn't breastfeed or bottle feed because of his cleft--it would either come straight out of his nose, or he wouldn't be able to swallow it and he would choke. Nolan was born February 18, 2012, and he was in the NICU for the first month of his life. Needless to say, it's been a long road that weren't necessarily prepared for.
I understand first hand the challenges ahead for you and your baby. We already had a little girl shout in apparent terror "Mommy what's wrong with him?!!" when I was changing his diaper. We also have people who look at his facial underdevelopment and say "Well, at least he doesn't have a cleft lip". Really?! I guess that cosmetic challenge is a bigger issue then the fact that my son can't eat or breathe on his own. So, I'd love to talk to someone else. I'd be happy to try and answer any of your questions, too. What's your story? How are you doing with all of this?
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