You'll find hundreds of files on cleft lip, cleft palate here on widesmiles.org.
This one is about: Reaching Out - Packets of Information that YOU can give to new parents of Cleft-Affected Babies.
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REACHING OUT - Packets of Information that YOU can give to new parents of Cleft-Affected Babies.
Remember when your cleft-affected child was born? Most people remember it as a time of emotional upheaval, grief, guilt, confusion and maybe even anger. And a total lack of information.
Well, it certainly does not have to be that way. How much would information readily available have help YOU? Most parents feel that it would have made all the difference in the world.
Cleft-talkers have brainstormed together to compile a list of the sorts of things we could each gather individually to offer to brand new parents of cleft-affected babies in our local communities. Feel free to add to or take away from this list as you see fit. Many of the documents can be obtained by sending email to email@example.com and asking for the materials for your new parents kit.
After collecting the materials for your kit, be sure and make copies of everything so you will not be re-inventing the wheel every time a new baby is born. Then contact the maternity wards or the social work department of your local hospitals. Send a letter and then follow up with a personal visit to show them the materials you have to offer new parents. Then expect a call when you least expect one.
When you visit a new family remember that you are there to share resources and experience. You cannot dispense medical advice. You are there to share with them something even the best doctors cannot offer: the value of your experience.
These parents may be grieving. They may be into denial, or angry, or feeling guilty, and they may also be confused and overwhelmed. Validate for them that grief is a normal process of this adjustment. Also validate for them that they do, in fact, have a beautiful and healthy child who has an extra challenge. Let them know that the challenges can be met one step at a time, and that you are there as a resource for them all along the way.
Following are items you may want to include in your New Parents Packets:
- Basic information about clefts;
- The Cleft Lip and Palate Fact Sheet by the March of Dimes;
- A special New Parent Issue of WIDE SMILES;
- A flyer for a WIDE SMILES Subscription;
- Information about Cleft-Talk;
- A listing of phone numbers for National Support Networks;
- The following Cleft Links files:
- New Parent FAQ
- Bottle Feeding instructions
- Breastfeeding Considerations
- Document on family stressors
- Before and after photos of your own child and/or the Wide Smiles Photo Gallery
- A Mead-Johnson bottle (seek permission from Mom and Dr. to demonstrate)
- A bibliography or a listing for lending library of books and tape, to include:
- Back issues of WS
- A Parent's Guide to Cleft Lip and Palate
- Cleft Palate Story
- Feeding the Newborn with a cleft (video)
- When your baby has a cleft (video)
- Rosie the Imperfect Angel
- A listing of local information:
- Craniofacial teams
- Children's services
- Support Groups
- Numbers of local families willing to share
- A blank tablet for writing down questions as they come up;
- A coupon for a free night of babysitting by "old pro's";
- A card congratulating them on the birth of their baby containing your own message.
Example sentiment: "Congratulations on the birth of your beautiful child! I do not know you, but I already know the joy, fear, love and bewilderment you feel today - because I have felt it too. Yes, your child is wonderful - and beautiful and lovely. He is your treasure. Love him with all your heart! There are
challenges ahead as there are with any child. You will just have a few more than some. But you are not alone. You are never alone. Please feel free to call me any time."
...And leave your number.
Be sure that the parents have granted their permission for your visit. Giving them information is important, and it is equally important to listen. And we cannot stress often enough that you are there to share your experience and what information you have gathered. You are not there to give them medical advice.
Good luck, and remember that all the other cleft-talkers are here to give you the moral support you may need.
Cleft Links | Wide Smiles | Photo Gallery