Your Child Was Born With a Cleft…
Now What?

"You hold the master key to your child's self esteem"

1) First and foremost, look at your baby’s face and fall in love. It’s hard to imagine that you will miss that face, now, but I guarantee you will. It’s the face you fall in love with.

2) Ask your pediatrician to recommend several cleft palate teams. Meet with all of them, and decide for yourself the best team you feel comfortable working with. It’s a long relationship with many emotional highs and lows. You’ll want to feel good about sharing your baby and your life with them. The team should have lots of experience and good results. Ask questions. Don’t leave yourself in the dark about feeding, care, and comfort of your child. Many Children’s Hospitals have excellent cleft teams.

4) Discuss feeding options for your baby. If you choose to breast feed, immediately ask your Pediatrician or cleft team to recommend a lactation consultant who specializes in children with clefts. I was lucky to have one in the city where I lived. Unfortunately, I wasn’t aware that Julianne had a feeding problem until she was undernourished and needed to take drastic action. 

5) Tell your other children (and extended family members) before they see your baby.
Read books to them about children who are different. Rosey…the Imperfect Angel and Chester…the Imperfect All-Star are tools you can use to enlighten siblings and classmates. Children to are astoundingly receptive and loving. I took Rosey to Julianne’s kindergarten class when she first started school. The children were fascinated and in awe…ultimately, very accepting. I’ll never forget one child saying in response to the book…”I wish I was born with a cleft!” 
(Go to the SHOP button at the top of the page for information)

6) When friends or strangers want to see your baby, practice dialogue that will buffer their first look. I usually said,“ My baby was born with a facial defect, a cleft, but soon she’ll have surgery that will repair it” They would look, and then I’d say, “Doesn’t she have beautiful eyes?” This gives them a minute to think about making a positive response.

7) You and your partner should consider therapy. I wish I had earlier in the process. My therapist helped me understand my erratic feelings. She also helped me understand what my husband was going through….he was dealing with Julianne’s birth in a very different way than I was. Ask your cleft team to recommend a therapist.

8) Consider joining a cleft parent’s support group. They can offer so much insight to what you may be feeling…and, as your child grows, what they may be feeling. Start with an online site: Wide Smiles: www.widesmiles.org

9) The surgeries are stressful, but ultimately life changing. I was glad I didn’t do outpatient surgery with Julianne. I needed the comfort and safety I felt with her being in the hospital. Also, the oxygen tent which helps the healing process wouldn’t have been available at home. If your doctor recommends outpatient surgery, make certain you have access to phone numbers to get the answers to your questions. You need to feel confident and cared for.

10) Your child will have lots of doctor appointments. Make them fun! I used to take new toys with me, wrapped as a gift she could open in the waiting room. As Julianne got older, I would take her to lunch, maybe shopping after. We always made it an event!

11)  Start working with insurance companies as soon as your baby is born. Your doctors are your best allies for helping you with your insurance coverage. They will write letters of explanation to your insurance company. If you don’t have insurance, seek information from the The American Cleft Palate-Craniofacial Association: www.cleftline.org. They may be able to guide you in getting the right help for your child.

11) It’s very important to be referred to an orthodontist who specializes in cleft care. Orthodontic care is lengthy and tedious for cleft children. It often involves numerous oral surgeries as well. Julianne completed her orthodontia with a cleft specialist in San Diego. It was more than an hour’s drive from where we lived, but, again, we made it an event. We’d always stop for lunch and a little shopping (she’s a girl who loves to shop). One time we even went to Sea World! I will always remember the day she called me at work, after her braces had finally been removed, to thank me for her smile. I cried!

12) Constantly re-enforce your child’s inner and outer beauty. Provide books and movies that show triumph over adversity. Talk about their feelings from the very beginning. Go to your child’s school when they start kindergarten and educate classmates through books like Rosey, or movies and pictures along, with your own ideas about introducing them to children with a facial difference. If you don’t feel confident, ask the teacher to address it in class. Young children are open and real. Their abilities to accept and understand are far greater than we think. Write letters to your children and keep them in a special place for them to read as they get older. Tell them how much you love them, how beautiful they are, and how they have made you a better mother.  I guarantee these are the keys to strengthening your child’s self esteem.

Last but not least, if you can afford, donate to organizations who offer life-changing help to children with clefts all around the world. We are so fortunate in America to have the best care possible. Think of babies who grow up that never have an opportunity to have their cleft repaired. Sadly, they are outcasts. Don’t let this happen to another child if you can help. Organizations like Operation Smile and Smile Train take teams of doctors to third world countries and perform surgeries for free to help these children and their families.    
Bless you, Sandy Peckinpah

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Some of the Best Websites:

For team care information and locations:

Cleft Palate Foundation.: www.cleftline.org 

The American Cleft Palate-Craniofacial Association:
www.acpa-cpf.org

Fresh Start: www.freshstart.org
         
About Face USA: www.aboutfaceusa.org

The Cleft Advocate: www.cleftadvocate.org

Wide Smiles: www.widesmiles.org

Charities you can help:

Operation Smile: www.operationsmile.org

Smile Train: www.smiletrain.org

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   Julianne, the year before her braces came off.