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Jackie Fedeli
Jackie Fedeli
Contributor • (215) 985-0300

Support Group for Parents with Children with Cleft Lip Palate

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I have not even been married for almost a month and people are already asking me and my husband when and if we’re planning to have children.

This is a big decision. One that I think should not be taken lightly. It’s something that we have to be financially and emotionally ready for. We want to make sure we’ve worked hard enough and are far enough along in our careers that we can devote a significant amount of time to raising children. Also, we have to make sure we’re emotionally ready for children.

There’s one more thing that plagues our minds: “What if our child were born with some kind of birth defect?” That leads to even more questions. Can we prevent this from happening? Would we be able to properly care for the child and meet all of his or her medical needs? How would he or she adapt socially?

These hypothetical questions will be very real to over 6,000 sets of parents this year. The CDC estimates that each year 2,651 babies in the US are born with a cleft palate and 4,437 babies are born with a cleft lip with or without a cleft palate. One of the most common birth defects, cleft lip and cleft palate affect one in 500 children in the United States.

But, there is hope. One Organization has proven to parents that these birth defects do not mean the end of the world.

The Cleft Lip & Cleft Palate Foundation of Smiles offers a Network of Support for parents and children going through this difficult process. Their website www.cleftsmile.org offers parents a chance to share their stories, read articles, and directs them to resources in their state such as doctors, educational and child care programs, medical and financial assistance, and emotional support groups.

Their Weimer Bottle Project Helps provide special bottles that babies with cleft palate and cleft lip often need and insurance does not want to cover.

Through their facebook page, Foundation of Smiles let’s parents share their stories, photos, experiences and ideas, and feel as through they are part of a community during a time where they may otherwise feel isolated. The foundation fosters a camaraderie amount members and supports.

What I feel is the most touching program offered by this emotionally supportive social network is the Bring A Smile Program which encourages members to send get well cards to other members, who without this network would essentially be strangers, to or for their child who has just undergone surgery. I know from first hand experience, that during a very trying time, the best remedy is often an unexpected simple gesture from someone showing that they care. This program is truly a wonderful thing.

Pennsylvania Attorney, Michael Monheit sits on CleftSmile’s Board of Directors.

Michael offers additional resources for Pennsylvania parents whose children were born with cleft lip and cleft palate as a result of taking the anti-epilepsy drug, Topamax also known as Topiramate at http://www.anapolschwartz.com/practices/topamax/topamax-resources.asp