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Finding Out About Your Baby’s Cleft

Acknowledge your emotions

  • It is normal to feel many different emotions, especially when you first find out.  Parents often experience shock, denial, grief, and even anger at any given time.  Everyone handles things in their own way, and that is okay!
  • Acknowledge your feelings and give yourself permission to mourn the loss of the child you thought you’d have.
  • Talk about your feelings with your spouse or partner.  It is also important to reach out to other family members and friends.  You might also consider seeing a counselor.

Seek support

  • Getting in touch with people who’ve been through the same thing can be helpful.
  • Joining a support group is helpful for many people.  The Cleft Lip and Palate Foundation of Smiles is made up of an amazing group of people whose lives have all been touched by cleft lip and palate.  Members are considered family and are encouraged to reach out anytime.
  • Ask your doctor or a social worker at your hospital if they know any other parents in the area who have cleft affected children.

Seek information

  • Start by asking your doctors lots of questions.  If you’re not satisfied with the answers — or if a doctor is unable to answer your questions thoroughly — don’t be afraid to seek second opinions.
  • The amount each person would like to learn varies from parent to parent.  Try to educate yourself as much and as soon as you are able.  You will quickly realize that you’re your child’s best and most effective advocate.
  • The internet can be a useful tool.  Be careful, however, because many parents report that they read things that they were not ready for or that they were scared by some of the images and/or information available.
  • Books written for parents of children with birth defects can be helpful.
  • There are several national organizations for cleft lip and palate.  They are full of information and resources for parents and caregivers.
  • Keep a binder to organize all information about your child’s care.

The Team Approach

  • Children born with cleft lip and palate require a team of professionals to treat them.
  • Although some hospitals already have teams ready to deal with cleft lip and palate, you may find yourself having to serve as both the main point of contact between the different care providers and the coordinator of your child’s appointments.
  • As soon as you are able, get to know the different team members. Make sure they know who else will be caring for your child and that you intend to play a key role.

Celebrate Your Child

  • Remember to let yourself enjoy your child the same way any parent would, and to share your joy with family members and friends.
  • Many parents of kids with birth defects wonder if they should send out birth announcements.  This is a personal decision — the fact that your child has a health problem doesn’t mean you shouldn’t be excited about the new addition to your family.

 

This information was created by (Eden White) the Cleft Lip and Palate Foundation of Smile.

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Site last updated December 5, 2016 @ 3:07 pm; This content last updated May 10, 2011 @ 4:08 am