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Bilateral cleft lip/palate

lexiareinlexiarein member
in Special Needs

I just found out at 20 weeks that my son has a bilateral cleft lip and palate. It's possibly caused to Smith-Lemi-Optiz, but I was against the amnio to find out for sure.

I'm just trying to get my ducks in a row and learn as much as I can before he is born. DH just started a new job, so we are on COBRA until 3/1 when his real insurance kicks in, so I can't call them to find out anything as far as what we're covered for, etc. 

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Re: Bilateral cleft lip/palate

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    rsd12rsd12 member
    Hi and congrats on your pregnancy. My oldest of three boys was born with a unilateral cleft lip and palate. Our first few steps, we met with the craniofacial team at our local childrens hospital. We met with their surgeon and loved him, dentist, maxo surgeon, pediatrician, ent, speech therapist... and they all gave us an idea of our first few years with our child. Things really did not start until he was born... so you do have some time. Our son is almost 7yrs old and just a typical boy! The first year was the most difficult so far with a few surgeries and our first newborn. But things do get better! Please let me know if you have any specific questions.
    Boy 1 2/06 - Boy 2 12/07 - Boy 3 9/09
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    lexiareinlexiarein member
    Thank you :-)
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    Dreamofmusic768Dreamofmusic768
    If you do have trouble with insurance, or you just want to contact them for some help you could contact El Rey Grotto in Elyria Ohio. This group works with the Grotto Humanitarian Foundation, a group that works with Special needs Dental care. They often work in close conjunction with the shriners on cleft lip and palate. I have more specific contact info if you would like it, but I dont want to put out his name publicly.
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    rakle99rakle99 member
    My cousin was born with severe cleft lip and palate. He required many surgeries over the years, but is now a successful college grad with no speech or eating difficulties, and has minimal scarring. If they could do this two decades ago, think about how much more can be done now for your LO!
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    aankac12aankac12
    My 3.5 month old daughter was born with a bilateral cleft lip. Addy's cleft was a complete surprise until her birth. She has a genetic condition called van der Woode syndrome. Her palate was completely intact though.  She had her lip surgery at 9 weeks.  Now we are almost 7 weeks post op and she is doing wonderful.  Her surgery was about 3 hours long.  The toughest part for me was seeing her right after surgery...I was not expecting her whole face to be swollen and she looked so different without the cleft. If you have any specific questions, feel free to contact me.  I know it can be tough.  People tend to get judging looks when they see a baby that "doesn't look normal". I was super emotional about it at first, but then I just starting explaining the cleft when I noticed people staring.  
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