Cleft Story

The nurse educator hear is amazing.  She and I have been in contact periodically since my first trip here actually.  We have helped her with many questions and much direction in cleft care and education.  Last year while here, at her request, I worked with her to write some education materials- take home instruction that she translated for the parents, teaching for the nurses, pre and post op instructions and teaching, etc.  I also did a small cleft presentation for the hospital staff.  They had so many questions, but what struck me the most was that many of them were so suprised to hear that we had as many clefts in America as they do and that we don’t always know the reason why a baby is born with a cleft either.

Susan has been working very hard with outreach and education.  Today, she told me a story of a baby that was sent with the father from another hospital shortly after birth and the mother was still in the hospital.  The father was very angry and actually trying to read a newspaper instead of listen to her.  He was very upset that the nursery had put a feeding tube in to feed the baby.  Susan went through all her instructions and teaching about the cleft, care, and surgeries.  She took the feeding tube out and used supplies that we had left to show him how to feed the baby.  He seemed grateful for that, but remained very distant and angry.  She began to talk more about clefts and the reasons the baby could have a cleft, including the fact that sometimes we don’t know.  He still acted distracted and unwilling to listen to her.  She finally said, ” I know you are angry, but I want you to listen to me….your baby’s cleft is no ones fault.  It could be as simple as your baby could have even been sucking her thumb at that point in development.”  At that moment, he looked at her, shocked, and tears began to stream down his face.

Then, he told her that he was very angry because he thought the baby’s cleft was the fault of the mother’s family.  He was also angry at himself because he saw no other choice but to leave his wife and baby because of the disgrace.  Just knowing that was not the case, and that it could be something as simple as sucking her thumb, completely changed him.  He was so appreciative and thankful for the education and the time that she spent with him.  She had changed his families future.

These are the reasons we come and that we allow ourselves to be used!  I tell this story, not at all to brag on anything we have done, but to show the power of so many working together to help and heal each and every cleft child we can come into contact with.  Each and everyone on our team covets the thoughts and prayers and kind words of “what a blessing we will be.”  But, oh, how I wish I had a more in depth way of saying, “We are truely the blessed ones!”     

Emily