mom of 19yr.old born w/cleft palateand lip

Wow--sounds like you have one strong young man on your hands. Thanks for sharing your story with us!!

Tracy

Robin

I am so glad you shared your story..your son sounds amazing. My little guy is 4 and has been dealing with some pretty major medical issues since birth...it's really nice for me to see that your son is still so positive and happy. I worry alot about how my son is mentally, with everything going on in his life it makes me nervous that he'll struggle....

Hugs to you and your son!
Kate

It amazes me how kids who go through so much in life, just go along with it.......not complaining, not worried.....just loving life. Your son sounds like a true miracle. I am so happy to hear a diagnosis was made.

Shonda

Your note was just what I needed to hear. My little man is tiny still and I know I should handle one thing at a time, but deep down I get thinking of the long term effects. Of course there is just no knowing...but I can now imagine him still smiling at 16! Thank you. Cathi J.

As you can probably tell from my user name that I am a NICU nurse. We see so many clefts and the miracles that the surgeons perform. I guide the parents through the learning how to eat (haberman etc) and the cranial facial team takes over. Most of the repairs that I have seen were done the age of 6 months. I had the honor of watching a cleft lip repair and the work was amazing. If I had not know that the little girl had surgery. I would have never know that there was every any cleft repair done.

I hope that your cranial facial team has support for you also. I know that in speaking with parents that the support of other parents and the social worker is priceless.

Thinking of you and your baby. And his big smile!

Robin, sounds like you have an amazing son. I agree that there is light at the end of raising a child with birth defects and disabilities. My daughter was born w/Hydrocephalus, she has been through alot, as she does everyday, she is now 18 yrs old and I thank God everyday for her!! It's always nice to talk to other Mothers about our wonderful children. I hope that everyhting keeps going good for you and your family.

Thanks
Gay

My son Zachariah is only 1 month and is having surgery in the morning to put pins in his jaw to grow the bone. he has Pierre Robin or Tracher Collins. Thank you for posting your comments. So that we know there is light at the end of the tunnel. As a family we know that God has healed him and will bring him through his surgery.

I hope that Zachariah's surgery went well today. Your family is in my thoughts and prayers.

Tracy