Jane Nicholson
When a child is born with a cleft lip and/or palate (CL/P), it is most often a shock at the time of delivery. An enormous amount of information will have to be absorbed above and beyond that which is needed by all new parents. What follows is a compilation of the collective wisdom of a group of parents whose children were born with a cleft. It is our hope that these insights will make it easier for new parents of such children and those who provide care for them.
One mother of a 22-year-old with a repaired cleft lip and palate (CLP) reflected at the time of his graduation, “I wished I would have known how successful he would be and how well he would do. I wish someone had told me his own wonderful spirit would be the driving force of his success. No one tells you that things will be OK.” Parents need to know that their children will do well. The key word should be encouragement. The encouragement should start from the very beginning.
For most parents, the birth of a child is a joyful event. After months of anticipation, we look forward to seeing and holding that newborn baby. The pain of child-birth will be over, but there can be a very noticeable difference in the tone of the birthing room when a child is born with CL/P.
There is an awkward moment when the doctor breaks the news: “Your child has a cleft lip and palate.” Suddenly, all of the relief and joy that had been anticipated is replaced with fear and confusion. Most people have never seen an unrepaired CL/P, and to see it in the face of one's own child is a shock indeed. Those who find out at the time of an ultrasound scan may be equally anxious.
First and foremost, it is important for the medical personnel to assume a positive attitude. It is human nature to imagine the worst when one encounters something new and unexpected. Most parents who have lived with a child with a cleft could tell you that the reality is not as bad as they had expected. At every step along the way, health providers can help the parents by reassuring, giving hope, and providing resources.
From the moment of delivery onward, the tone and demeanor of the doctor and staff should be reassuring. “This is a common birth defect and one that can be repaired. Most children do well.” If a pediatrician is not already present, then let the parents know that a pediatrician will take a look at the baby and make sure that otherwise everything is all right.
A subset of babies will need initial help with breathing and stabilization. Let the parents know what is taking place. If the baby needs to be moved to another area, make sure that the parents know what is being done and give timely updates. Reunite the parents and baby as soon as possible. Good communication is paramount.
Parents are worried and may feel that they are drowning and need a lifeline. Since their fears are probably far worse than the reality, the sooner they can get accurate information, the better. Be truthful. If you do not know what you are talking about, then do not offer incorrect information. Tell the parents that you will get them to the people who know about CL/P, and then do it.
Some hospitals will be more prepared than others. In a center where children are routinely seen with this problem, there may already be a team in place. Other hospitals should help the parents with their immediate needs and then connect them with specialists who can help with the baby's care.
First, the parents need some time to be with their baby. Let them hold and cuddle the infant. Meanwhile, a plan needs to be made about who needs to see the child and when this can be done. Once a plan is formulated, give the parents an outline of the game plan about who will see them and when.
Write information down and suggest that the parents do too. Because there is so much information, it helps to have it written down. Small amounts of information accumulate quickly. Most parents find it helpful to have some type of organizing notebook. While providing a notebook from the start is not necessary, it can be suggested. The materials provided can be grouped together in a folder. There can be a section where questions are kept.
Remember that many of these are first-time parents. They have to learn all of the same things as new parents. They have the added insecurity of not knowing what additional problems having a child with a cleft will bring. The severe fatigue and emotional roller coaster of postpartum hormonal changes can affect all new mothers. It can help to let the parents know that these are normal feelings.
It is also completely normal to feel sad, overwhelmed, and upset. One nurse told her patient, “First you have to grieve for the loss of the child that you thought you would have, then you will learn to love the child that you have been given.” No one expects to have a child with a birth defect. Consideration should be given to having the parents meet with a social worker or psychologist.
Before parents are sent home from the hospital, they need at least the bare facts about the causes of CL/P. At some point, formal counseling with someone from genetics can be very helpful. However, right away, these parents will be faced with many people who will want to know what happened. It is human nature for parents to assume that they somehow caused or are responsible for the birth defect.
A simple explanation is all that is needed to start. “We do not know what causes cleft lips and palates, but we know that it was nothing that you did or failed to do during the pregnancy. They just happen.” Some are the result of a genetic syndrome, but most are the result of multifactorial causes. It can happen to anyone in any family. Fingers should not be pointed at anyone. We do not choose the genes that we pass down to children. Be sure they hear “It is no one's fault.” It is worth repeating.
Parents also need some idea about what repairs will be done and what they will entail. The initial repairs are not done for several weeks, so let the parents know that they will have time to absorb the information and learn.
Some hospitals have a plastic surgeon or an oral maxillofacial surgeon who can come and speak with the parents to give them information. Depending on the time of day and the other responsibilities of the surgeon, it may be later in the day or the following day when he or she can meet with the parents. If this is the case, then let the parents know. Sometimes, the parents will need to bring their baby to another hospital or clinic. If this is the case, then arrangements should be made on their behalf to have an appointment in a timely fashion. Then, they should be given up-to-date written materials to review on their own prior to this visit. Make sure that pamphlets are not outdated.
Confidence can be infectious. A positive attitude and confidence on the part of the surgeon make a world of difference to the parents. Parents have noted that it felt reassuring to have the plastic surgeon confidently tell them that this is something that can be fixed.
Before and after pictures are very helpful. Some surgeons have a notebook to share with parents so that they can have an idea of what to expect for their child. Many parents remember only people who did not have the most cosmetic repairs. Times and techniques have changed, and they need to know there are wonderful things that can be done with plastic surgery.
Because the cleft is in the middle of the baby's face, it is an instant point of focus. Help the parents learn that there is much more to their baby, something they will learn over time. Tell them their children are beautiful. Emphasize the positives and point out unique features, e.g., “Look at her beautiful eyes, hair, coloring, etc….” Everyone likes to hear nice things about their child.
Feeding
The most immediate concern is getting the child to eat. Many children with a cleft will have feeding difficulties. Tell the parents that this is the first challenge and that each baby is unique. There are many ways to help a baby eat, and what works for one may not work for another. Through trial and error the best means of feeding each baby will be determined.
One mother lamented that she was told that “these kids fail to thrive.” Another said she was told that her child would have feeding problems but he did not. If only the medical staff had been more positive about it, e.g., “Some children with clefts have problems with feeding, but we will work with you to find out what works best for your child.”
Bring in the most qualified person or persons to help. This may include a lactation consultant, a postpartum or newborn nurse, a pediatrician, or a speech-language pathologist. Many different specialty bottles, nipples, and feeding devices are available. Parents should not be sent home until a satisfactory means is found to feed their child.
If a mother has planned to breast-feed, then she should be encouraged but should know that up to 85% of babies may not physically be able to breast-feed. The normal mechanics of breast-feeding include suction from the baby's mouth around the nipple and pushing and squeezing the nipple against the roof of the mouth to release the milk. Suction may not be possible because of the cleft, and a defect in the roof of the mouth may make squeezing the milk out impossible. There are some techniques the mother can use to circumvent these problems, but it most often would take the skill of a lactation consultant to help with this complex process.
Some cannot breast-feed despite their best efforts. Many mothers will feel guilty because they feel like they have failed if they cannot breast-feed. Help the parents find the best way to feed their infant. Tell them that what is important is for this baby to eat and grow. If she wishes to pump and save the breast milk, provide access to a hospital-grade pump. Taking care of any infant is time-consuming and taking care of a baby with a cleft can be exhausting, so any saving of time is appreciated.
Clinic and Hospital Visits
Once the baby goes home, the family starts on a journey of clinic visits and surgeries that may last well into the baby's teens. It is overwhelming at first but becomes routine over time. It is important to get off to the right start and to have each clinic visit be a positive experience.
Sometimes coming to the hospital and clinic setting can be a relief. Out in public, families often have to explain about the child's cleft. It can be tiresome as parents would prefer to talk about the same things as all parents. In the medical community, seeing a child with a cleft is common and a cleft is only one of many different medical conditions. Hence, it gives a chance for the kids just to be kids. Joke and laugh with them. Treat them as if they are special.
One parent, a lawyer, commented that when a client steps into his office that person wants to feel that he or she has his undivided attention and at that moment is the most important person in the world to him. It is no different in the medical office. When parents bring their children to a clinic visit, they know that time is very short and much must be accomplished.
When the children come to clinic visits, recognize them as unique individuals. One parent noted, “It is extremely important to remember each child.” Before the child walks into the clinic, always take time to read his or her chart. Review what has happened in the medical course of events. Consider having some place on the chart where unique things about the child can be noted, something like “collects rockets” or “plays soccer.” Be sure to use the child's name.
Always introduce yourself and tell the family what your function is that day. Even if the child is familiar to you, it can help to say “I'm Doctor X, the oral surgeon. I saw you last December. Today, I want to take a look at you so we can talk about the next surgeries you may need.” Or “I'm Doctor Z, one of the resident doctors who works with Dr. X, I am here to find out how you are doing. I have heard a lot about you. After I am done, I'll come back with Dr. X.” Coming to clinic visits can be an anxious time, so it helps to know the game plan.
Language is very powerful. Pick the words and phrases you use carefully. Never talk down to a child. Try to be cognizant of the child's age. Although they may be young, they are likely to be smart and perceptive.
Never talk in front of the child as if he or she is not there. If it is necessary to use medical descriptions and technical terms, then explain them to the child and parents. For example, “I want to describe some things in medical terms to my colleagues so they can learn more about you and about your cleft lip and palate. When we are done, we will make sure that we explain everything to you. Then you can ask questions so that we make sure you understand everything too.” Always be cognizant that the parents and child are listening. Take time at the end of the visit to make sure that all questions are answered.
Some families make a special event of the day when their children come to the clinic. Remember that these children have to be pulled out of their normal activities and often miss school. Since it is the nature of children to fit in with their peers, it can be awkward to have attention drawn to them because they have a difference. By making it a family day and a positive experience, some of the discomfort from missing activities may be offset.
Surgeries
“Giving up my child to the surgeon was one of the hardest parts about having a child with a cleft,” lamented one mother. It is indeed one of the hardest times and yet has to be faced repeatedly. There are some things that can make it easier.
Make certain everyone knows what to expect. When is the surgery to take place? What does it entail? How long is it expected to take? Will you let me know how things are going if it takes longer than expected? How long will the child be in the hospital? What does the recovery period involve? Who can we contact if we have questions or problems?
Have a written set of instructions. Be specific and detailed. Most parents are not medically oriented. It is better to write too much than not enough.
Let parents be with the child as much as possible. Many hospitals allow the child to be with a parent right up to the time that the child is being put to sleep. This helps the anxiety of both the parents and the child. Make certain parents are able to be with their child at all times in the hospital, including spending the night.
Over time, parents will realize that their child is much tougher than they thought. It does not hurt to hear this ahead of time. Kids become “old pros” at being tough for surgery, but we need to remember that they are still children.
Resources
Parents universally felt that resources were paramount. Providing access to up-to-date resources is a valuable service of healthcare providers.
One of the most helpful resources is another family with a CL/P child. Most parents say they would be happy to help a new family. They can provide a wealth of information because they have been through the same things themselves. If such a network is not available in your community, consider starting one.
Speech
Most children with a cleft will need some degree of speech pathology services throughout their lives, but as with information about feeding problems, do not make blanket negative statements. Not all children will have problems, but those who do will have resources available to them.
As parents, we worry about how our children will communicate. Will they be intelligible? Will people make fun of them? Will they sound funny? We do not want anything to interfere with their independence and self-esteem.
Although speech difficulties are common, it is reassuring to know that there are resources to help. Speech-language pathologists have numerous ways to help children.
Parents should be told that there is teaching and assistance through their intermediate school district. Laws are in place which mandate services to children with special needs. They can be directed to these services by a social worker or a cleft support team. There are also special funds that can be used to support the medical expenses of these children. Parents should not have to worry needlessly when there is funding available.
Conclusion
Parents have a special love for their children. All parents want their children to be happy. We want them to be free to enjoy childhood. We want to nuture their self-esteem, to give them the best chance at future endeavors. We all want to protect our children from harm.
While these are universal parental feelings, those of us who have CL/P children worry even more. In fact, because a child has a facial difference, the parents have a heightened sense of protectiveness for that child. While the children can do very well, it takes a while for the parents to see that. We need all of the support and nurturing we can get from healthcare providers. Help us so that we can launch our children into the world, just like that successful college graduate.
Stories from Parents of Children with Oral Clefts
Karen's Story
My 4-year-old daughter, Ashley, is a bundle of smiles and sensitivity, with golden blonde hair. Although Ashley goes to speech therapy only two evenings per week, every night when I pick her up from day care she meets me with a smile and the same one-word question, “Speech?” Ashley truly enjoys the one-on-one instruction she receives from her speech therapist, Andrea, at the Scottish Rite Clinic in Roseburg, Oregon. Although her one-word question may not say much on its own, Ashley uses her eyes, smiles, and gestures to get her point across.
Ashley's story begins much earlier. Ashley's father was born with bilateral CLP. When I was 19 weeks pregnant, we chose to receive genetic counseling prior to the birth of our child. On January 26, 1996, her father and I unexpectedly learned that our daughter would be born with cleft lip (CL) and most likely cleft palate (CP). I began preparation for my daughter's birth with anticipation, shock, guilt, and fear. I made phone calls to doctors, friends, and national support groups to gather information on how to feed our daughter and what to expect with surgeries. My daughter's first encounter with a speech therapist came about while I was putting everything in place to prepare for her birth. I phoned the Child Development and Rehabilitation Center in Portland, Oregon. The director of the craniofacial team, a speech-language pathologist, spoke with me about what to expect after the birth of our child and the services provided by their team. This pre-birth instruction and the ongoing instruction and support our family receives from our craniofacial team have been invaluable. Ashley was born with bilateral CLP. We met with the craniofacial team, including the speech therapist, for the first time when Ashley was only 10 days old. I still remember the speech therapist telling us that the first sounds to expect from Ashley would be M, N, H, W, and Y as these do not require air pressure to make them. My advice to all members of a craniofacial team working with a parent who is dealing with acceptance of a child born with a facial birth defect is that first impressions are always remembered.
Since Ashley's father had first-hand experience of living with CLP and being a registered nurse myself, I felt informed of what the future might hold and that we had a foundation of knowledge and experience. However, but despite any knowledge a person has, there is always more knowledge to obtain. My advice to all members of a craniofacial team is to never assume that parents who are members of the medical field or whom have a cleft themselves comprehend their child's medical care. When Ashley and I are on the patient side of medical care, I am her mother and no more. I need things explained clearly and several times before medical information sinks in. The medical field is always changing, as does the cleft and the child. Please, start at ground zero and ask parents questions, reinforce information at follow-up appointments, use verbal communication a parent with no background in the medical field would understand, and allow parents time to ask questions. There is an obvious and enormous benefit to meeting Ashley's needs through the interdisciplinary approach of the craniofacial team; however, please know that a day with the craniofacial team can be overwhelming when I walk away with new information about audiology, dentistry, plastic surgery, genetics, otolaryngology, and speech therapy, new information that changes my daughter's life.
The story continued when Ashley was referred to early intervention for speech therapy. My advice to members of a craniofacial team making a referral to an outside agency is to follow through with families, ensuring that children you referred actually qualified for services. My daughter was denied speech services at both 10 and 17 months of age due to the wording of the eligibility criteria, even though she had a wide CP at 10 months of age and a large palatal fistula at 17 months of age. “Denied services?” I could not believe it. Ashley had appropriate receptive and expressive language at both assessments; however, impaired articulation by itself was not an eligibility criterion. When she was 3 years old, I was told that the eligibility criteria had changed. What magically changes when a child turns 3 years old so that she qualifies for speech therapy? My advice to members of a craniofacial team is to advocate for patients to receive speech therapy at an early age and to be aware of eligibility criteria for speech therapy in agencies with which you work. It took my questions, ideas from my public health nurse, and finally a physician to write a medical referral for early intervention to qualify her for speech therapy. Yes, even as a registered nurse, I need to bounce ideas off of my public health nurse, who helps to case-manage my daughter's medical care.
Ashley ended up qualifying for speech therapy in July 1998. Her speech therapist at the time worked with Ashley at day care and sent assignments for me to work on with Ashley at home. Therapy at her day care was convenient, but I admit that homework was rarely done because I had little idea of how much emphasis to put on sounds and what type of correction I was supposed to be giving Ashley. Although letters sent home for me to read were beneficial, they did not help me to work with my daughter. I was missing out on hearing what Ashley was able to accomplish with her speech therapist at day care. Ashley's speech difficulties involve a variety of factors, two of which are difficulty effectively closing her top and bottom lips together as needed to make sounds and a large palatal fistula. It was not until July 2000 and after two previous palatal surgeries that Ashley's fistula was finally closed using a tongue flap graft. Ashley frequently substitutes sounds she cannot make with alternatives and speaks in sentences with few words or uses gestures to get her intent across. My advice to all members of a cranio-facial team is to make sure parents observe every speech therapy session while children are still young as both the child and the parent are impressionable.
In June 1999, as Ashley turned 3 years old, she was re-evaluated to determine what services to provide for the next year. The options included continuing speech therapy at day care, placing her in Headstart preschool, or attending the Scottish Rite Clinic. A worry her speech therapist brought to this meeting was that she could seldom find a quiet place to work with Ashley at her day care without interruption from other children or teachers. My concern with placing Ashley in Headstart was that she would start in the morning at her regular day care, be transported to and from Head-start, and be returned to her regular day care until the end of the day. I felt this was too much disruption for a 3-year-old, who at the time had undergone a total of eight surgeries and just experienced her parents' divorce.
My advice to all members of a craniofacial team is to listen and help the family to look at all factors influencing the decision. Based on Ashley's needs, the decision was made, and Ashley settled in to the routine of speech therapy at the Scottish Rite Clinic. Ashley has remained there for 2 years now, and we are at present discussing how to transition her speech services to the public school next year for kindergarten. I observe every speech session, twice weekly. Ashley is currently working on the P, B, T, and D sounds while I sit in an adjoining room behind a one-way mirror. The one-on-one environment provides the attention that both she and I need to learn how to help her speech. Tomorrow, when I pick up Ashley from day care, chances are she will run up to me and say “Speech?” and I will remind her to say, “Mommy, are we going to speech today?” So that is how the story goes…at least for now.
Tanya's Story
My name is Tanya, of Troy, Tennessee. My husband John and I had a son, Ty, on January 6, 2000. Ty was born with bilateral complete CLP and no upper gums. My husband was born with unilateral CL; therefore, our chances of having a baby with a cleft were slightly higher. I learned how to feed using nasogastric tubes and syringes and later the Haberman feeders, which we still use today. I stress to parents the need to use the proper feeding methods with your children, feed in the upright position to reduce the risk of ear infections, burp also the same way due to the risk of aspiration, and always wash and sterilize everything that goes into their mouths due to infection. Enroll your child in an Early Interventions Program (they work with children up to 3 years of age and help you find the specialists you need). The Tennessee Infant/Parent Stimulation Program also will work with your child as far as hearing, vision, stimulation, and motor skills to make sure they are progressing as they should for their age. Keep all doctors' appointments, which include plastic surgeons, speech therapists, audiologists, and otolaryngologists among others. After surgery, always follow your doctor's suggestions as far as the feeding regimen and arm restraints. It is important not to affect the surgery site in any way by keeping foreign objects, fingers, and other things out of their mouths. So far, we have had no ear infections, but there is a heart murmur that will close spontaneously; finally, he's gaining weight. Make sure you keep your child's immunizations current. Read any and everything you can find on clefts. Unfortunately, we had no information or local groups here. I have been lucky and found everything on my own with the help of the Internet. There, I found the support of other families just like us, who had tons of information to offer. Check out the Widesmiles web site (http://www.widesmiles.org). Always remember that craniofacial anomalies can be repaired. Your children can grow up to live normal, happy lives with few or no effects. These children will endure much with the many surgeries that lie ahead, but remember that they are young and can heal more quickly. Through this ordeal, I have learned to appreciate how precious life is and how to be a better parent.
Aggie's Story
At the age of 21, I gave birth to a son with complete CP. When he was 3 months old, he had his first surgery. When he was 1.5 years old, his palate was closed. The surgeons explained to me that this is usually a two-part operation and that they like to close the hard and soft palate at the same time. The chances of it reopening were very high, and they were right: his soft palate reopened, to about the size of a dime. When he was 2 years old, the doctors decided to do some lip revisions and close the soft palate again. This operation was successful, and the soft palate stayed closed. When he was 5 years old, they performed a bone graft, to replace bone that was missing on the upper part of his jaw, where his two splits were. Meanwhile, I had to take him for speech therapy for 2 years, twice a week, to help him learn to speak more clearly. At the age of 15, he had grown enough to do the jaw alignment; they had to take out the upper part of his jaw and bring it forward, using metal plates and screws to hold the jaw correctly in his mouth. At the age of 16, he had surgery to reconstruct his nose and more lip revisions. They made the brim of his nose thinner, tucked his nostrils in a little, and built up the cartilage under his nose. Now, at the age of 17, he will be going for more revisions on his face, to make his lips even on both sides. I was very lucky that he was not born with any other problems but the CP. It was very hard for him growing up and making friends, but now he is older and knows how to handle situations. Being born with CP is very hard, but we all manage.
Lynn's Story
My daughter, Elaine, was born with unilateral CL 2 years ago. It was a surprise to my husband, our doctor, and me. When she was born, the nurses and doctor told us how they see CL often, but no one was able to offer us any factual, useful information.
For 2 months, we felt like the only people with a cleft baby. Then, we moved halfway across the country.
Within 2 weeks, we were meeting a world-class plastic surgeon at a highly ranked hospital. She was scheduled for surgery within a month. I was nervous about putting my little darling under anesthesia and about changing the little face with the gap, I had loved from the first minute I had seen her, the face we bonded with and the smile that filled our hearts. I asked the cleft case nurse if there was a mother I could talk to who had gone through this surgery recently with her baby.
She called an hour later with the name of Susan G. Her son, Lance, had the same kind of cleft and had his repair the day my daughter was born. The way I looked at it was that Susan's family was 3 months ahead of us, so I could ask any question about what to expect during and after surgery as well as the recovery period. The first time we talked, I was overwhelmed by the emotions I revealed to her and found that we shared the same thoughts about the situation. There are some emotions and questions that constantly weigh your mind down: “What did I do wrong?” “How could I have prevented this?” “Why us?” “What if something goes wrong?” “Do we have to do it, she's so cute now?” To find someone who can say she felt the exact same way is like embracing an old friend you shared your deepest secrets with as a child. Friends and family were very supportive and reassuring but did not truly reassure me. I felt like they were patronizing me. They meant well and really tried, but I just did not feel comforted, until I heard Susan say “She'll be fine, and it will all go well.” She said the same thing so many people had said to me, but she had the same true-life experience of the cleft, the feelings of guilt, success the repair, and the recovery. It was her comments and assurances that finally reached me.
Susan quickly became a wonderful resource, the most comforting and informative, even better than the literature or the Internet because she was a live person with whom I could interact. The doctor and cleft case nurse could only say so much; this was a routine job for them. They see literally hundreds or even thousands of cases, many much worse than ours, every year, so I turned to Susan. I asked questions about the surgery, how long was he out, how much pain was he in, how long was he in surgery, how long before his swelling went down, etc. She reassured me by telling me how great and how different he looks. She even sent me pictures of him before and after surgery.
The most amazing thing about Susan and her family was how they opened their lives to us in many ways. They invited us to stay with them the night before the surgery because they lived 20 minutes away from the hospital and we lived 2 hours away. They had never met us, except for the numerous phone calls. They fed us dinner, gave us some snacks to get us through the waiting, and most importantly talked to us late into the night. Once the husbands went to bed, Susan and I stayed up talking until I had to give Elaine her last feeding at 3:45 A.M. The ease with which we talked was distracting enough that the night flew by. We talked about the surgery and about our lives, so we were able to relax and enjoy their hospitality.
The surgery went very well, and Susan was right: she looks like a different baby. We still talk to Susan and her family and, when we go for appointments with the plastic surgeon, we visit them. Recently, Elaine had a lip revision, and once again, I was on the phone with Susan because her son had had the same procedure done a couple of months before. She was available for me, and I have also been there for her; we have a bond now, which will always be there, no matter what.
Because the experience of having another mother to talk to was so rewarding for us, I asked that I be put on a list for any other mother who wants information or just to talk. At Elaine's first postoperative visit, I met Tracey S. and her family. I hope I have given her one-tenth of the support and reassurance I was given.
My daughter's cleft story is nothing extraordinary, unless you count Susan and her family. They were amazing, and they made the difference for us. They opened their home, their hearts, their lives, and their ears to us. For that, we will be eternally grateful.