If you're the parent of a child with cleft lip and palate, chances are you've gotten quite an education since you first heard that diagnosis. What would you say today to parents who are just getting the news? Tell them about that book that explained everything, that website full of resources, that e-mail group you still lean on, that experience with your child that made you see things differently. Those of us who have been there have important gifts to give those who have not yet done that. Offer your words of wisdom and experience here. Tell Your Tips
Eveni
- I forgot to mention in my resume of my experience with my son. He regurgitated most of his food. I think this was a safety response to the choking. When it came down his nose, i scooped it up and put it back in his mouth. Remember the mouth and nose of a C/P baby are one unit. Always finish with a drink to clear the passages and airways. I kept a bib on him and a cloth +change of clothes handy. It happened and i learned to accept it. Other people who reacted with 'Oh he's been sick', or 'Oh it's come down his nose' .. well that was THEIR problem. I ignored it, the most important thing was him eating something and his well-being. I fed him mushy food. Warm Weetabix (with milk an sugar), mashed potato and put all solid food thru the food processor. He ate well. You'll be depressed to start with and ask why MY baby but set that aside and concentrate on helping baby. Do all the things you'd do with a non CP babe and talk talk talk and stimulate right from day 1. Believe me it'll pay off!
- —Eveni
Cleft palate
- I have/had diabetic pregnancies and as a result my son who was born 40 years ago with a cleft hard palate, had no soft palate or uvula and the sphincter muscle that shuts the windpipe when you swallow was missing. He couldn't suck and i dribbled milk off a teaspoon for 14 months. He choked on everything that I offered him and I had to learn to firstly be patient and reassuring. Talk calmly to him whilst feeding (they sense your emotions right from day one) and feed him before he was really hungry. Also don't give any strong tasting foods.When he was 14 months he had an envelope reconstruction of the throat and palate. To begin with he did have heavy cleft palate speech but the surgeon gave me some advise which i shall pass on to you. NEVER accept second best, correct him EVERY time he mispronounces a sound or word. Now my darling boy is 40 and has had perfect speech since he was about 5. he is now a normal and fit man and none of his 4 children have inherited his condition. Be positiv
- —Eveni
complete Unilateral cleft lip and palate
- As one of the parents having a kid with the problem, i would urge fellow parents who might have the same problem to seek medical advice immmediately the child is born. For my child's case, i have been taking him for medication since he was one week old, he was assisted on how to feed since he couldn't suckle and i am impressed. Big ups to all the concerned doctors out there.
- —MILLICENTSHERRIE
