Creating Craniofacial Awareness

The Goldie family of Burlington has made it their mission to ensure their son Connor and thousands of others with craniofacial difference get the support they deserve.

By Scot Haney

Scot Haney is a meteorologist at WFSB Channel 3. His weekly feature, “Every Town Has a Story,” appears Fridays on Eyewitness News at 5:30 p.m.

Hartford Magazine | April 2006

When Erin and Gavin Goldie of Burlington received the news that they were going to have their first child, they thought, "We’re going to have a wonderful, healthy baby—we were ecstatic!” says Erin. “We are planners; we wanted to know the sex of the baby.” After a multitude of ultrasounds, they found out they were expecting a boy. Erin also found out that she had gestational diabetes. During her pregnancy, her body was producing too much insulin and her doctor recommended she have a level 2 ultrasound, recommended for women with high-risk pregnancies. The doctors wanted to check the baby’s size and while the fetus was growing at the correct rate, something else showed up. “I’ll never forget the look on the nurse’s face,” says Erin. “There was something wrong, I'm going to have the doctor come in and talk to you’.”

The doctor told Erin the baby was going to be born with a cleft lip. “My heart broke into a million pieces,” says Erin. Having worked for an ambulance in emergency service for years, Erin had seen journals about cleft lips. All that came to mind were “horrific images, pictures of children born without a mouth and nose.” They learned that Connor’s was a medium case, a unilateral cleft lip, only on one side. A part of his lip and the left side of his nose were missing and his gumline was wide open. When he was born, they also learned the roof of his mouth was missing.

At least Erin and Gavin were prepared. Erin says while cleft lip is number four on the list of Top 10 birth defects, it’s usually only discovered when a Level 2 ultrasound is suggested. Rough statistics show 80 percent of women don’t find out until the baby is born. In the United States, there are over 500,000 children with craniofacial difference and no one knows why it happens. Erin and Gavin needed help, not only preparing for a baby with a severe birth defect, but for what to expect when the baby arrived. Hartford Hospital immediately referred the couple to Connecticut Children’s Medical Center where they met Dr. Charles Castiglione and Dr. Rich Bevilacqua, who Erin says made them feel great.

The day came and Connor Richard Goldie was born. No medical procedures can be done for the first three and-a-half months. Erin would have to feed Connor with special feeding bottles—which cost $27 to $35 dollars each—and deal with the fact that her child was missing part of his face. It didn’t matter to her. “I looked into his eyes and he said, ‘Mom, it’s going to be okay.’” At 3-and-a-half months, Connor underwent surgery on his lip, nose and gumline. At 10 months, they reconstructed his palette. At 3-and-a half years, they did a lip revision and at age 7, Connor will go in for a bone graft to create a gumline.

While it’s not easy watching their son go through these surgeries, Erin and Gavin know what to expect. What they weren’t prepared for was other people’s reactions to their son’s problem. Erin recounts an incident that happened while shopping at a mall. “A woman looked down into Connor’s carriage and said, ‘Oh, what a cute baby!’ That was followed up with, ‘What did you do wrong to have a baby like this?’” Fighting back tears, Erin realized the woman had at least said something. Others stared, whispered and avoided eye contact with Connor. “We have friends that no longer call us.” While the medical teams were available, Erin realized there was no support group in Connecticut for people dealing with craniofacial difference.

Erin’s mission began. She started F.A.C.E. (Families Advancing Craniofacial Excellence). In four years, the Goldies have done an incredible amount. In 2003, Senate Bill No. 1 Public Act No. 03-37 passed. It states insurance companies in Connecticut have to provide orthodontic coverage for surgeries, process and appliances for craniofacial children from birth to age 18 when designated by a doctor or craniofacial team. “We were able to prove to the state it was functional, not cosmetic.” But some private insurance companies still don’t have to comply, so Erin is now working on the Federal Reconstruction Surgery Act that would “force every single insurance company to provide coverage.” Erin wants it to be clear, “This is not cosmetic surgery. There are breathing issues, eating issues and developmental issues.” Erin has also established a toll-free number, which gives families an opportunity to seek assistance, understanding and support without the worry of long-distance charges.

There is still a long way to go. Erin knows awareness and education in the community are so important. “Our children need compassion,” she says. At a recent fundraiser, F.A.C.E raised money for a Craniofacial Camp herein Connecticut where kids born with these birth defects can get away from it all and be among other kids with the same problems. “It will be a week where kids are enhanced,” says Erin. “We’ll build their self-confidence and their self-esteem.” Erin also hopes for an office “where we can have a non-clinical environment for families to come and find out more about their options.”

To learn more about F.A.C.E., call (860) 673-1829 or toll-free at (888) 380-FACE, or visit, www.smilesforchildren.org.

By Julie Howard Staff Writer

Every child had a smile at the F.A.C.E. 2nd Annual Craniofacial Children's Holiday Party at the Farmington Senior and Community Center. Erin McCall-Goldie, founder of the non-profit group, F.A.C.E. (Families Advancing Craniofacial Excellence), estimated 115 children and their families attended and enjoyed a buffet lunch, face painting, and a visit from Santa who gave each child a present.

After the highly anticipated arrival of Santa Claus bearing gifts, a highlight of the party was having the children gather for a reading of "'Twas the Night Before Christmas," by Senator Jonathan Harris. Harris has been influential in developing laws to aid craniofacial families in getting adequate health insurance coverage for the expensive surgeries needed by the children.

"People think this is a cosmetic issue," said McCall-Goldie, mentioning that even the March of Dimes organization does not consider cranio-facial disorder a birth defect. She is concerned that insurance companies are not properly covering the expenses incurred by cranio-facial families. "Its life and death," because often "these babies can't eat or breath properly" without the surgery, she explained. Senator Harris was glad to volunteer at the party, saying McCall-Goldie "inspired me to get involved" and now he "feels like part of the family." State Representative Demetrius Giannaros also attended the holiday party and said the cranio-facial "issue comes to the state capitol for action almost every year." He said he works "to promote better health coverage," but that "more needs to be done at the state and federal level and in research."

Now that the holiday party is over, F.A.C.E. continues working to support and promote the needs of cranio-facial families. With over 3,500 children in Connecticut diagnosed with some form of cranio-facial disorder, F.A.C.E. has plenty of work to do. "There is no separate support group in Connecticut," said McCall-Goldie, and F.A.C.E. is not affiliated with any hospital. "We are looking for committee chair people and desperately need a grant writer" to continue meeting the financial needs of these families, she added.

Many donations went into making the holiday party a success. Local restaurants, businesses and individuals came together in the holiday spirit of giving. Nancy Nation and the Avon/Canton Rotary Club donated and wrapped over 100 toys with the help of Girl Scout Troop 1139 Leader Pat Maloy. Parents of the Preschool class from the Burlington Academy of Learning in Burlington donated toys and food. Miss Megan's preschool class from Lake Garda Elementary School in Burlington donated 20 new books for gifts.

Fred and Maryann Meeker from Kensington donated their Flower the Clown and Mr. Fred the Magician 30 minute show. Kerry Walsh from Piece of Cake Children Parties in Bristol donated DJ services, face painting and helium balloons. The New Britain Rock Cats Mascot appeared at the party with family 4 passes to next year's season to be raffled. Rich Sklenka from ReMax played the part of Santa. Farmington High School Culinary Arts Students directed by Chef Dennis Dorio and Chef Al LeSage donated 15 Gingerbread houses to be raffled off; the students played elves, help set up and handed out gifts with Santa. Emily, Jade and Sage Van Schelt supplied the Santa's Winter Wonderland Scene.

Food was donated by the Unionville Stop and Shop, George's Pizza, Bristol Panera Bread, Emily's Catering Group, Canton Shaw's Supermarket, D'Angelos Deli in Avon, Deepwater Lobster of Avon, Little Mark's Big Barbecue in Avon, Chili's Restaurant in Simsbury, Debra Bruzik from Building Brothers Inc. in Southington, Aeromatic Supply Company Inc. (paper goods), and Pizza Palace in Torrington.

Other volunteers included Dennis and Mary Dorio, Paula Kennedy Milewski, Emily VanSchelt and family, Pam Palmer, Donna Barr and Bob Lobley.

To become involved in F.A.C.E., visit their website: www.smilesforchildren.org, or call Erin McCall-Goldie at 673-1829.

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A Note From the President of F.A.C.E.
May 23, 2003

On Friday May 23, 2003 Governor John G. Rowland, Governor of Connecticut signed Senate Bill 1. Senate Bill 1 sponsored by Senator Kevin B. Sullivan, 5th District, will bring an improved quality of life to children with craniofacial conditions. As the mother of a child who was born with a cleft lip and palate, as well as being the president and founder of F.A.C.E. (Families Advancing Craniofacial Excellence). I am eternally grateful to Sen. Kevin Sullivan for not only his compassion and understanding of the importance of uninterrupted comprehensive care for craniofacial children, but for his perseverance in supporting this worthy bill. I would also like to acknowledge our parents who testified and spoke on behalf of this bill:

FACE's motto is "Every child should have a smile", thanks to Sen. Kevin Sullivan, craniofacial children will FACE a brighter future.

For additional information and history on Senate Bill 1 www.cga.state.ct.us

To view the Senate Bill click here

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Runners Wanted to Help Boy

Friday, May 16, 2003 - Record-Journal, Meriden Connecticut

By Deanna Lee Chaparro, Record-Journal staff

SOUTHINGTON - Billy Thomson is just 9 years old but already he has had upward of 10 operations on his face. His mother, Diann Thomson found support from the cranio-facial team at Connecticut Children's Medical Center and from a support group known as F.A.C.E. F.A.C.E. which stands for Families Advancing Craniofacial Excellence provides emotional and financial help to families with children born with various head and facial deformities.

Thomson is organizing a 5-kilometer road race starting at Mount Southington in September to raise funds for F.A.C.E., as well as to educate the public about cranio-facial disorders. It is the first race Thomson has organized, and she's looking for business and organizations to help sponsor the event.

Cleft lip and cleft palate are the fourth most common birth defects in the United States, and they occur in one out of 700 births. Even though they are not rare conditions, many people don't know about them, said Erin McCall-Goldie, president of F.A.C.E.

Bill was born with a cleft palate, which means he had an opening in the roof of his mouth where the two side of the palate did not join together. McCall-Goldie's son Connor was born with a cleft palate, cleft lip and cleft gum line. The disorders can be corrected, but often requite multiple surgeries and orthodontic treatments. Often parents don't know about the defect until the child is born. Learning a child has a disorder is devastating. Thomson said. Children with cleft lip or palate can suffer problems with eating, speaking and breathing. Babies need specially designed bottles that can cost as much as $35.

"It was really scary," she said, and more so because Billy was her first child. At age 7 Billy had his last major surgery, in which doctors removed bone from his hip to use in his jaw. His first surgery was at 10 weeks old. Today, Billy is doing well, Thomson said, but will always need extra orthodontic care. Those treatments aren't often covered by insurance and both Thomson and McCall-Goldie testified at the state Capitol on the need to change that. Both the state House and Senate passed a bill that would require insurance companies to cover the cost of surgeries, procedures and appliances. Thomson's father-in-law, Bill Thomson, was very supportive and encouraged her to organize the race. When he died earlier this year, the family asked that donations be made in his memory to the children's medical center.

Diann Thomson is hoping the community can donate either money, food, supplies, or time. The race will be held on Sept. 14, beginning at 9 a.m. F.A.C.E. is also sponsoring a golf tournament at 9:30 a.m. Aug. 26 at the Blue Fox Run golf course in Avon.

To donate to F.A.C.E. or for more information about the race, call Thomson at (860) 621-2764 or McCall-Goldie at (860) 673-1829

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Taste of Chocolate Benefits Craniofacial Birth Defects Organization

February 20, 2003 - Farmington Valley Post

By Jay Nowakowski, Correspondent

The first annual "Taste of Chocolate" was held Sunday, Feb. 9, at Avon Old Farms Hotel in Avon. The fund-raising event, sponsored by F.A.C.E. (Families Advancing Craniofacial Excellence), was designed to benefit Craniofacial Birth Defects/Craniofacial Department of the Connecticut Children's Medical Center. It is estimated that this condition effects 1 in every 500 live births.

Families Advancing Craniofacial Excellence (FACE) was founded by Erin McCall-Goldie of Burlington. McCall-Goldie and her husband found out that their son Connor, who was born in 2001, had a cleft lip and possible cleft palate before he was even born. "Only now is this condition getting fully recognized," said McCall-Goldie. "People didn't realize the depth of this condition. Some thought it was just cosmetic. But it involves so much more than that. Children born with these conditions often have difficulty just eating and breathing. The first thing I thought of when I learned of Connor's condition was, "how would I tell my family and how would other people react to him?" she said. "But everyone has been just so supportive and that has been so encouraging."

The event consisted of a Chocolate Dessert Auction, a musical presentation by the Life of Riley Dancers of Enfield, and an award presentation for the best chocolate dessert. There were a total of 17 entrants into the competition, which included The Farmington High School Culinary Arts program and various area restaurants such as Cugino's, Modern Pastry Shop, Metro Bis, Seasons Restaurant, Carmen Anthony's Fish House, The Grist Mill, Hopbrook Tavern, Buon Appettito, Fat Cat Café, Cassille's Restaurant, La Trattoria, Ristornate Italia, Max Amore, Max A Mia, The Front Porch Café and Pizza Plus Restaurant.

In total the event attracted more than 200 people and raised in excess of $4,000. The master of ceremonies for the auction was Prudence Sloane, the star of the program entitled "Let's Eat - The Prudence Sloane Show. At the conclusion of the auction, there was a special awards presentation for the best chocolate dessert. "The Farmington High School Culinary Arts Program won hands down." Said McCall-Goldie. An expert panel of five judges based the award on taste, presentation and hard work. Culinary arts program instructors Dennis D'Orio (voted Chef of the Year by the CT Chef's Association", and Al LeSage worked with the students in creating a "Chocolate Extravaganza." In addition, D'Orio invited Stefan Riemer, the pastry chef for the Disney Yacht and Beach Club in Florida to work with the students in creating their entry.

"I used the opportunity to come here to instruct the students and help them with the competition," said Riemer. "This was a great opportunity for us to put the students out there for the show," said D'Orio. "When I first told them of the contest they just said, "We're doing it. "Some of them took time off from work and others rearranged their schedules." Whenever you can get kids to help other kids like this, it's just awesome," said D'Orio with pride.

The fund-raiser did much to put forth F.A.C.E.'s motto of "Every Child should have a smile."

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F.A.C.E. To Sponsor Chocolate Taste-Testing

Tuesday, January 21, 2003 - The Hartford Courant

Avon - A fund-raising "Taste of Chocolate" event will be held Feb. 9 to benefit research into children's craniofacial birth defects and the craniofacial department of Connecticut Children's Medical Center.

The event is sponsored by F.A.C.E. (Families Advancing Craniofacial Excellence), which is based in Unionville. Erin McCall-Goldie of Burlington, whose son, Connor, underwent reconstructive surgery to repair cleft lip, runs the organization.

"Taste of Chocolate" will run from 2 to 5:30 p.m. on Feb. 9 in the Towpath Room of the Avon Old Farms Hotel which is located on the corner of Route 44 and Route 10. The entrance donation is $20 per person.

Area Restaurants will provide samples of their best chocolate desserts to be judged in a competition. A chocolate auction also is scheduled. Special guests Kevin Hogan and Brian Van Aken from WFSB, Channel 3 will attend, and the special guest judge in the chocolate contest will be Connecticut Magazine's Devin Janosov.

Metro Bis of Simsbury and Carmen Anthony's Fish House, Max-a-Mia and Front Porch Café, all of Avon, are among the restaurants that have confirmed their participation.

F.A.C.E., a nonprofit organization, helps raise awareness of craniofacial birth defects such as cleft lip or cleft palate, which can be repaired by plastic and reconstructive surgery. The craniofacial department at Connecticut Children's Medical Center is the only one of its kind in Connecticut. F.A.C.E. is trying to raise money to help with supplies such as feeding bottle used by babies with craniofacial birth defects and related expenses.

State Sen. Kevin B. Sullivan, D-West Hartford, recently submitted a bill to the General Assembly's public health committee, proposing to require all heath insurers to cover the medically necessary orthodontic treatments and equipment used in the treatment of craniofacial disorders.

For more information about F.A.C.E. or the Feb 9 fund-raising event at Avon Old Farms Hotel, call McCall-Goldie at (860) 673-1829 or send an email message to her at smilesforchildren@sbcglobal.net

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Auction to Benefit Children with Craniofacial Birth Defects

Burlington Woman Puts a Face on the Children and Physician Who Help Them

August 8, 2002 - Farmington Valley Post

By Maria O'Donnell, Correspondent

Burlington - Cleft lip? Cleft Palate? What are they? These are facial and mouth related birth defects. But how many women in their childbearing years understand what they might possibly have to deal with during pregnancy. As daunting as the defects seem, one Burlington woman wants to educate the public about the hope there is in dealing with both conditions. To do so, Erin McCall-Goldie has started a new support/fundraising group called F.A.C.E. (Families Advancing Craniofacial Excellence), which will hold a Silent Auction on Sept. 27 to benefit children with craniofacial birth defects.

McCall-Goldie and her husband Gavin found out that their son Connor had a cleft lip and possible a cleft palate before he was even born. A level II ultrasound during the 26th week of pregnancy indicated one of the birth defects. Such a level of ultrasound was specifically used to monitor the baby during his mother's case of gestational diabetes. The Goldie's didn't expect to hear that their son was having problems of his own. They were devastated. They'd envisioned a perfect child. "I couldn't see Connor and I didn't know much about (the conditions)," the boy's mother said.

According to McCall-Goldie, cleft lip and palate occur during the first four to six weeks of pregnancy when the lip, gum, palate, and nose area does not fuse together. The tunnel in Connor's palate goes from the roof of his mouth into his nasal cavity, and toward the back of his throat. "Connor had surgery at three months of age, where they joined together his lip and realigned his gum and nose," McCall-Goldie noted. "He will have his palate surgery in November, and then more surgeries after he is five years of age, consisting of orthodontia and plastic surgeries." Connor is currently 7-1Ž2 month old.

Recounting her own experience, McCall-Goldie said that when Connor was born, her doctor held him up for her to see him. "I'll never forget. He stuck his tongue through the cleft as if to say, "Hey, mom, everything's OK." "I saw the cleft for three seconds, and that was it." To Connor's mom, the cleft no longer existed. McCall-Goldie's plea to mothers: "It's not the end of the world. The babies are healthy; they're going to be happy. Repair starts at 3 months of age." She empathizes with women who find out about the defect during pregnancy. "Until you hold that baby in your arms, you're not able to understand. But it's the same baby. Once the baby's here, it's a whole different ballgame. Your fears go out the window when you hold the baby."

Much credit goes to the Craniofacial Team at Connecticut Children's Medical Center in Hartford, which has been the Goldie's rock of comfort throughout the rest of Erin's pregnancy and beyond. Case Manager and Nurse Practitioner of the Craniofacial Team Lynn Pittsinger provided the Goldie's with as much information as possible. "(The team) was with me every step of the way," said McCall-Goldie. "Lynn said it was repairable. She said Connor would (have surgery) and look beautiful."

Pittsinger noted that Dr. Charles Castiglione, director and program manager of the Craniofacial Team, "is an excellent surgeon. (He performed Connor's surgery.) We're very fortunate to have him as well as the others." The team also consist of orthodontists, dentist, plastic surgeons, ear/nose/throat specialist, a neurosurgeon, photographer, and pediatric developmentalists. "From a clinical perspective, this is really comprehensive team care," said Pittsinger. "The physicians and people on the team are phenomenal, and I'm proud to work with them." She added that most of team volunteers their time to the Craniofacial Department, which has been in existence for about 20 years and follow 1,500 children's cases.

The department does not receive state of federal funding, but thrives on donations. Not only do they support children with cleft lips and palates, but also work with children born without ears or noses, as well as those who have premature fusion of the skull. "Anything from the neck up," said Pittsinger, adding that misshapen skulls are the most common cases that come to her department. About two years ago, cleft lip and palate diagnoses were found in 1 in 700 live births. Pittsinger said that research has now shown statistic to be 1 in 500. She said the cause of the defect are predominantly unknown. Research has indicated some genetic markers, according to Pittsinger, including "a potential for some toxins we're not aware of."

She said of McCall-Goldie's situation, "Erin is one of the first prenatal cases I'd had. She was very devastated by the news. She, her husband, and son have done a remarkable job. Erin's program F.A.C.E. has become essential. We're stretched to the max, but there's tremendous research potential and a lot of capabilities that need to be put to use. What she's doing will help us get there."

McCall-Goldie's organization F.A.C.E. is a non-profit and raises funds for the Craniofacial Department and for craniofacial children. All donations go toward surgical procedures, feeding bottles, counseling groups and scholarship programs. I'm very passionate about F.A.C.E.," said McCall-Goldie. "We need this to help other families." F.A.C.E.'s motto? Every child should have a smile."

The first F.A.C.E. sponsored fundraising event will be a Silent Auction held on Fri. Sept. 27. 7-10 p.m. Executive Director of the Charter Oak Cultural Center, Rabbi Donna Berman, has donated the center for the evening. It is located at 21 Charter Oak Ave. in Hartford. The donation request in $10 for ticket information, call (860) 673-1829 or email: smilesforchildren@sbcglobal.net Emcee for the event will be Scot Haney of WFSB TV Channel 3. According to McCall-Goldie, "We are still accepting donations from business owners for our Silent Auction and we are looking for a package store to donate wine and a caterer for the reception." She credits Christine Newman as her "right hand in helping with the auction. Her son David was born with a cleft lip."

Next year's events include a chocolate auction in the winter, then a golf tournament and 5k road race in the summer. McCall-Goldie also welcomes donations to F.A.C.E. at P.O. Box 185 Unionville, CT 06085.