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.
Today eight-month-old Brayden eats and sleeps well and already knows how to shake his head to signal “no.” The Higbys say he has “turned a corner,” not only in terms of his cleft but also in his overall development.
Rob Southern, 24, estimates he’s had between 12 and 15 operations to correct his bilateral, complete cleft lip and cleft palate, but he’s lost exact count.“I’ve always been used to it,” he says, noting that volume two of his medical record is two inches thick.A native of Concord,Mass., and a graduate of Emory University in Atlanta, Rob had his first procedure at Children’s at three months of age and hopes that his latest one will be his last.
Facing hospitalization is difficult, especially if it’s for the first time.With very young children, one could argue that the parents feel more stress and anxiety than the child. But being prepared and knowing what to expect helps to relieve worries for both patients and parents.
“Many times we meet with prospective parents for prenatal consultations while the fetus is in utero,” says Dotty MacDonald, RN, clinical coordinator of the Cleft Lip/Palate and Craniofacial Program at Children’s Hospital Boston. “The birthing process is much easier when the parents are well informed and comfortable with their health care team.
“I also spend a lot of time preparing parents of babies for hospital admissions and answering questions about feeding, sleeping, and procedure issues,” she says. In addition, she provides detailed explanations to young children and their parents, and refers them to the hospital’s pre-operative (pre-op) child life specialist.
Hayley Bray, the child life specialist, is available to meet with parents and patients during their pre-op visit. She talks to children about their feelings and what to expect during their hospital stay. She assesses their needs based on age and whether they are new to the hospital or have had past hospital experiences. “A picture book and medical play are used to help prepare children for the hospital,” Hayley says. “If age appropriate, children can also take a unit tour. One way we help children to cope during their hospital stay is to encourage them to make an “All About Me” poster or create their own picture book of their hospital experience.”
Learning more about your child’s cleft or facial difference can help you feel more knowledgeable and comfortable. Reading basic information on the condition and corrective procedures is one way to start. Then you might want to make a list of specific questions to ask members of your child’s treatment team.
Rob S. turned to the Internet to do online research before his recent operations. “I try to really understand what’s going to happen,” he says. “I read online illustrated textbooks and medical forums.” Eva and Rob H. also found information on the Internet through the FFC website, which includes links to medical journal articles. In addition, they read Your Cleft-Affected Child, a book written by the mother of a child with a cleft palate, which discusses both emotional and medical issues.
Contacting other parents who have had similar experiences is another way to gather information. “A lot of people have been through this, but you don’t hear about it too much, unless you have a connection to it,” says Rob H. “We made a decision early on to not be private about this, so we could have access to those resources.”
One out of every 600 newborns is affected by cleft lip and/or cleft palate, making it the most common birth defect in the U.S. If the condition is known before birth, Dotty MacDonald encourages parents to speak to delivery room staff about their child. “Knowing that the hospital staff are aware of the diagnosis makes a huge difference,” she says. Parents and older patients can gain emotional support by talking to friends, relatives, or co-workers. “When Brayden was born,” says Eva,“we sent out pictures and joyfully announced here is our son.We reached out to people, and in turn, we got a lot of support.”
Rob S. is fortunate to have caring friends as well. One friend also has a repaired cleft lip, so he, perhaps best of all, can understand what Rob’s going through.
Friends, family, and neighbors can provide invaluable encouragement and assistance after leaving the hospital. Rob S. relies heavily on help from his parents while in the hospital, and when he returns home (and feels better), he invites friends to visit.
For the Higbys, having Eva’s parents fly from North Carolina to Boston for the operation and then help them take care of Brayden for the next two weeks made a tremendous difference. “We could not have done it without my parents,” Eva says. “They were willing to wake up in the middle of the night with Brayden and keep a close eye on him during the day.”
Experts at Children’s Hospital advise telling young children about going to the hospital a day or two ahead of time and giving simple explanations of what will happen. Older children can be given more advance notice and could be involved in the preparations.
Recognizing potential fears, such as being left alone, spending the night in a strange bed, or having painful procedures, can help parents decide how best to talk to their child. Be careful to use neutral words, such as the doctor is going to fix your lip, and let your child know that you or another family member will sleep at the hospital, too.
Reading an age-appropriate book is another good way to prepare your child for the hospital. A variety of books are available that will help familiarize your child with hospital personnel and procedures.
When packing your bags, be sure to bring comfort items, such as a pillow or blanket.Young children may want a favorite stuffed animal, doll, or other toy. Older children or young adults may want an iPod to play music or watch videos, a hand-held game, or laptop computer.
The Craniofacial Centre team encourages babies, children, and adolescents to use relaxation techniques to help them cope. Before going to the hospital, have your child practice doing deep breathing, either through the nose or the mouth (as DarthVader in StarWars does).You could also ask them to imagine a calm or happy place, such as being at the beach on a sunny day, having fun at an amusement park, or just being at home in a favorite room. A 2004 study published in the journal
Pain found that children who used such guided-imagery had less anxiety prior to, and on the day of, the operation. Other studies have discovered that imagery can ease pain and speed recovery after the procedure.
If your child seems especially worried or frightened about going to the hospital, you may want to visit a counselor at Children’s Medical Coping Clinic. The counselors work with parents and children to prepare for upcoming procedures, offering evaluations, treatment, and support. (Note: This is not covered by all insurance plans.)
Rob S., who knows the hospital routine all too well, says he combats nervousness by putting his faith in Dr. Mulliken and the rest of the team at Children’s. “I know he’ll do a good job,” he says. “When I’m worried, I remind myself that he’s done a lot of these before, and I’ve always been happy with my results in the past. I trust him; he hasn’t failed me yet.”