Caring for a Newborn With Oral Clefting
If you have a newborn with oral clefting, one of the most stressful times you may have is the first year of your child's life. In addition to the normal stresses any new parent experiences, you have to adapt to special feeding procedures, surgeries, and an increased number of colds and ear infections.
Many parents also experience grief and depression when their child is born with a birth defect. This sadness is common and is often referred to as "mourning your healthy child," or the child you had envisioned when you became pregnant. It can be difficult to allow yourself to experience these emotions when you're struggling to deal with your child's daily care.
It can be especially difficult if the cleft wasn't detected in an ultrasound. Many parents experience shock and confusion in the delivery room. In many hospitals, parents now meet with a cleft palate team coordinator or geneticist within hours of their child's birth - this can help ease concerns and answer initial questions.
Special Considerations for Parents of Newborns
Get in touch with your child's cleft palate team and your insurance company as soon as you find out about your child's cleft. They can answer your questions about the type of care your child is likely to need, as well as how it will be financed.
Phyllis Thomas, RN, MS, the cleft palate program coordinator for Delaware, makes the following recommendations to parents who are looking for a cleft lip and palate team:
- Ask how many patients the team serves - the larger the number of patients, the more experience its members usually have.
- Ask if the team is a member of the American Cleft Palate-Craniofacial Association (ACPA). Any team that is under the umbrella of ACPA has to meet certain guidelines.
- Contact ACPA for their national and international listing of teams.
- Consider convenience - remember that your child will have to see these doctors regularly, especially if he has a cleft palate.
Once you've found a team, Thomas encourages you to make sure you contact the coordinator of your child's team with questions about treatment. But she stresses that you'll need to work with the coordinator to plan your child's care yourself, including making appointments with individual specialists as necessary.
"I act as a guide. When I am informed of a newborn with cleft palate, then I meet with the family, meet with the geneticist, and provide the parents with articles and lists, including the names of members of the cleft palate team. I help parents make appointments as appropriate and guide the families as to what is needed," Thomas says, adding that she avoids actually scheduling appointments for parents.
You may want to purchase a date book to keep track of your child's appointments. This book can also serve as a central repository for information you collect, questions you jot down for various specialists, the names and phone numbers of team members, and directions to their offices. It's easy to become overwhelmed - staying organized is essential.
If you start to feel frustrated or are having trouble coping, remember that your baby's condition will be corrected over time. Give your child plenty of love and be patient. As with most infants, the first few months can be the hardest. If your baby cries excessively, call your child's doctor. And don't hesitate to call the cleft palate coordinator when you have questions about any aspect of your child's development - his or her job is to help direct you to the appropriate team member for assistance.
The Initial Evaluation
Your child's first evaluation will probably take place while he's still in the hospital, soon after birth. It will include a pediatric and genetics evaluation, as well as a feeding evaluation.
A geneticist or pediatrician specializing in genetics will examine your baby for any other abnormalities commonly associated with a cleft. The results of this evaluation may influence your child's future treatment plan.
One of the cleft team members - a nurse, speech pathologist or occupational therapist - will also advise you about feeding techniques.
Later on, you and your baby will meet with all the members of the team to discuss surgery and further treatment as necessary.
The biggest difference between babies with clefts and those without is feeding. Babies with a cleft palate find it difficult to suck milk from a breast or bottle.
Every baby is different and your child's feeding problems will depend on the type and the severity of his cleft. Your child's team will probably recommend a particular method of feeding; it's advised that you follow their recommendations, although you should certainly feel free to ask questions and request assistance as needed.
Feeding methods include:
Bottle-feeding. Your infant's doctor will recommend the bottle and nipple he or she thinks will work best for your baby. You might use a regular bottle with a special nipple, or a special bottle and nipple. Nipples usually need to be cut with a razor - you'll probably want to experiment with exactly how much they need to be cut to provide your baby with the proper flow of milk.
Feeding device. Some infants with cleft lip or palate are fed with a device called a brecht feeder and spoon until 4 to 8 months of age, at which point they can switch to a cup and spoon. The brecht feeder looks and operates like a turkey baster.
You'll learn to use the feeder at the hospital. It may be awkward at first, but you'll probably find you adjust to it quickly. Techniques for successfully using this type of feeder include:
- holding your baby as upright as possible to reduce nasal regurgitation of milk
- establishing a rhythm of gently squeezing the bottle when your baby suckles and allowing your baby to swallow the milk before squeezing again
Breast-feeding. Breast-feeding is an option for some babies with a cleft lip only or babies with a small soft palate cleft. You should consult with your child's doctor about whether breast-feeding is an option for your baby.
No matter what type of feeding technique you use, always clean the area around the cleft thoroughly with a cotton pad and sterile water after each feeding.
You'll need to give yourself some time to adjust to feeding your infant - and don't be surprised if you experience some common problems:
- Many parents find it takes from 30 to 60 minutes to feed their baby. This can be especially challenging for mothers who are expressing breast milk, which can take 20 minutes. If your baby needs to eat every hour and a half, feeding can seem never-ending.
- Your baby may eat less because it's hard work to eat and he may fall asleep more easily while nursing.
- Your baby may need to be fed in an upright position (using an infant seat), to keep food from coming out his nose.
- Your baby may need to burp more often.
It's a good idea to train other adults to feed the baby - this takes some of the pressure off you and might help you to relax and enjoy the feeding process.
Whether your child has a cleft lip or palate or both, he will most likely undergo surgery during his first year. This can be difficult for parents, especially because it requires general anesthesia and a brief hospital stay.
Bear in mind that you will probably suffer more than your child will, but it helps to be prepared for your child's appearance following surgery.
Your child will have stitches in the area of the surgery and he may have black eyes as well. Sometimes a special device called a Logan's bow is taped to the cheeks to ease some of the tension from the stitches. His arms may be restrained to keep his hands out of his mouth; most children are fitted for elbow tubes that prevent the bending of the arms before surgery.
There may also be bleeding in his mouth - gauze may be packed into the area for about 5 days after surgery. As fluids accumulate in the mouth and nasal cavity, they may be suctioned out.
The first time you see your child, he will probably be in an oxygen tent that's full of mist to help him breathe more easily. He will also be observed for airway obstruction or excessive bleeding. He'll be fed using an eyedropper or special nipple and may sit in a high chair to drink if possible. After being fed, your baby's mouth should be rinsed with water to help keep the stitched area clean.
After cleft lip surgery. Your child may be restless after surgery, but his doctor may prescribe medication to relieve any discomfort.
If bandages or dressings have been used, they'll be removed within a day or
2, and the stitches will either dissolve or be removed within 5 days. Your
child's doctor will advise you on how to feed your child during the first few
weeks after surgery.
It's normal for the surgical scar to appear to get bigger and redder for a few weeks after surgery. This will gradually fade, although the scar will never totally disappear.
After cleft palate surgery. For a day or 2, your child will probably feel some soreness and pain, which can be controlled by medication. During this period, your child may not eat or drink as much as usual, so an intravenous line may be used to maintain hydration and nutrition. Your child's doctor will advise you on how to feed your child during the first few weeks after surgery. It's crucial that you follow the doctor's advice on feeding to allow the palate to heal properly.
Your child will have annual meetings with the team as a whole. You'll want to use this time to ask questions, and it can be helpful to have them written down so you don't forget anything. Bring a pen or pencil with you so you can jot down answers.
You and your child will be assigned to a room where you'll stay while the team members come in to see you. Some may spend a long time with you and others may just ask you a few short questions.
After they each have a chance to meet with you, the team members will discuss your child's case and devise a plan for the next year. You may be asked to wait while they meet so one of them can tell you what they recommend, or they may send you home and mail a copy of their report to you later.
Depending upon the severity of your child's cleft, your child may need additional reconstructive surgery as he gets older. Cleft palate can require up to 15 surgeries during the course of the child's first 18 years. In both cleft palate and lip surgeries, the necessity for more operations depends on the skill of the initial surgeon, as well as the severity of the cleft, its shape, and the thickness of available tissue that can be used to create the palate. About 20% of children with a cleft palate require further surgeries to help improve their speech. Additional surgeries may also improve the appearance of the lip and nose, close openings between the mouth and nose, help breathing, and stabilize and re-align the jaw.
Not all children need additional surgery, though; you should meet regularly with your child's plastic surgeon to determine what's most appropriate in your child's case. Subsequent surgeries are usually scheduled at least 6 months apart to allow a child time to heal and to reduce the chances of serious scarring.
Final repairs of the scars left by the initial surgery will probably not be performed until adolescence, when facial structure is more fully developed.
It's common for parents of children with clefts to experience grief, shock, and even anger. It's important to acknowledge your feelings and to give yourself permission to mourn. One of the most important things you can do for yourself and your child is to seek support. Joining a support group with other parents facing similar challenges may help. Contact ACPA or consult the Web sites listed under Related Resources for more information.