I was born with a birth defect which made everyone think that I would be weak and dying. But they were wrong; except one thing, I do have a birth defect. It makes me a very special and gifted child.
In many ways I think this journey has enriched our lives. Of course we have our struggles, and certainly sending this happy little baby in for surgery every few months has not been easy. But becoming a part of the Children’s Hospital and cleft lip-palate communities has been a real blessing.
Our son Owen is a very active three-year-old who just happened to be born with a unilateral cleft lip and palate. The youngest of our four children, he is also our only child born with a cleft lip and palate. I remember that even though we were experienced parents, we were very nervous about all the surgeries he would have to undergo when he was a baby.
As someone who was born with hemifacial microsomia, I certainly had my fair share of surgeries and doctors appointments growing up. By the time I was fifteen, I had been through thirteen surgeries, or roughly one per summer. As I’m sure almost everyone reading this can relate to, surgeries are never pleasant or fun.
In 1989, Andrew Livingstone was born without a blemish, but two weeks later, a strawberry red growth began to bloom on his upper lip. At age three months, the mass enlarged quickly, extending up to his nose. It became an open sore, which would scab over, only to ulcerate again and again. Andrew’s pediatrician diagnosed the condition as a hemangioma and referred his parents, Seth and Marcy, to renowned expert, plastic surgeon John Mulliken, MD, at Children’s Hospital Boston.
In Your Own Words My name is Emily. My older brother was born with a cleft lip and palate. If you asked me if that makes him different than any other teenage boy, I’d tell you no.
“A facial deformity, or any deformity, does not prevent success,” says Mike. “The challenges associated with being different cultivate many positive characteristics, including endurance, courage, and leadership.” Mike, who has had 14 corrective procedures at Children’s Hospital Boston, believes the challenges associated with having cleft lip and palate have helped him develop valuable skills that have benefited him at MIT and throughout his life.
Two weeks before the birth of Rob and Eva Higby’s son Brayden, a prenatal ultrasound scan revealed that he had a bilateral cleft lip. The first-time parents began searching for a surgical specialist, and with the help of Eva’s brother and sister-in-law, whose child also had a cleft lip, found Dr.Mulliken and his team at Children’s Hospital Boston. In November, when he was four and a half months old, Brayden had his lip repaired and nose reshaped.
Jesse Kristin has had more than his share—10 facial operations, extensive orthodontic work and, as a child, not knowing how to respond when other kids asked about his cleft lip/palate. But at age 19, Kristin spends little time thinking about the past. He is busy attending George Washington University in Washington, D.C., where he majors in biology and, when possible, performs with The Sunday Mail, a piano-based rock band for which he plays drums.
Born with Hemifacial Microsomia with Microtia, Lauren Dausch from Sharon, Mass., was a 2012 recipient of FFC’s Jane C. McDaid Scholarship Award. This summer she will be working at Camp Starfish in New Hampshire, a sleep-away camp in for kids with emotional, behavioral, and developmental issues and disorders. Her dream career is to counsel children and teens as a social worker.
Carolyn Macedo recalls the awful feeling in the pit of her stomach. She had never heard the word craniosynostosis when her daughter, Nicole, was diagnosed with it. But she soon understood what it meant. The craniofacial condition causes a baby’s head to develop abnormally due to the premature closing of the seams between the bones.
We’ll never forget when the doctor came into our hospital room on Christmas Eve day, only eight hours after our daughter was born, and said, “We’re taking Madison to have her head X-rayed because of the indentation on the left side. It may be a fracture that happened while she was going through the birth canal.”
When a child is born in Alaska with a craniofacial condition, there is a good chance the family will become acquainted with the Foundation for Faces of Children. That is the goal of Cheri Scott, one of the founders of Stone Soup Group, an organization based in Anchorage that assists families who care for children with special health care needs.
Only few people understand facial disfigurement. Betsy Wilson set out to change that through her support and information network, Let’s Face It (www.faceit.org), which provides a broad range of resources for individuals whose faces are disfigured for any reason—burns, cancer, accidents or craniofacial conditions—and those who care for them. The Foundation for Faces of Children is one of those resources.
Many families make their first contact with the Foundation for Faces of Children via email. When they happen to be Spanish-speaking, Maria Carmen Thompson gets involved. The Mexico native spoke no English when she arrived in the U.S. in 1989. Since becoming fluent, she has used her bilingualism in corporate and educational settings. But Thompson regards her volunteer role as Spanish translator for the Foundation as special.
While in some ways it is difficult to quantify the effect that this has had on my life, upon reflection, it has shaped me in subtle but important ways. The most profound impact has probably been in developing empathy for others. Often times I would sit in a waiting room at Boston Children’s Hospital and look around to see other children with conditions far more severe than mine. After my own experience, it is difficult not to have a deep appreciation for the hardships they have had to endure.As a result, I have tried to be more compassionate of those around me and to understand the path that they have traveled.
Jared Popkin was only three months old when his cleft lip was repaired, so he has no memory of the procedure. But he’s seen before and after photos, and he visits Dr. Mulliken at Children’s Hospital regularly for check-ups. So last year when his third-grade teacher asked him to write an essay on what makes him special, he wrote about his cleft lip. “He’s proud of it,” says his mother, Bari,“because that’s who he is.” In Fall2006, when Jared was 9, he was eager to take part in the FFC Walkathon. He sent e-mails to friends, neighbors, and relatives asking them to sponsor him. “This organization is important to me,” he wrote, “because the Foundation for Faces helped me when I was a baby and was born with a cleft lip.” The response was tremendous—he collected $757. “He really took this walk to heart,” says his mother. “Every time a letter would come in the mail, he’d get so excited.You would have thought people were sending the money to him for his own use! And at the walk, he enjoyed seeing Dr. Mulliken and Dotty (nurse Dorothy MacDonald), and he felt like a celebrity.” A resident of Needham, Jared attends the Solomon Schechter Day School in Newton, which stresses performing mitzvahs or charitable acts. The walk was something he wanted to do, his mother says, and FFC is grateful for his efforts. Thanks, Jared!
My daughter, Ella, is almost six months old. She was born with a complete unilateral cleft lip and palate, undetected in two ultrasounds. Before she was delivered, my doctor said, “She will look a little different. She has a cleft lip and palate.” I cried and apologized to my husband. I wanted to know what I did wrong.
She does not cry to get attention, complain when in pain, or show any signs of discomfort until it is unbearable. I have seen her remain calm in a situation where I would have been unsettled and tough it out when I would have fled. I am fortunate enough to live with the person who has inspired me the most and who has had the most influence on my life.This strong, yet shy and funny person is my 22-year-old sister, Kara.