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For Patients and Families

 

Infancy and Childhood

Practical Tips

The most immediate health issues for a child born with a craniofacial condition can be divided into five categories: Breathing, Feeding, Nutrition, Sleeping and Social adaptation

    You should discuss with your child’s care team how each of these areas can be addressed as early as possible. Here are some facts to bear in mind, with suggestions to minimize potential problems.

    Breathing

    All newborns breathe through the nose during the first three months of life.

    Any obstruction to your child's nose or mouth can interfere with eating and breathing.

    Your child's doctor may recommend a pulse oximeter -- a non-invasive device worn on the finger -- to measure the amount of oxygen reaching your baby's bloodstream.

    Signs of trouble to watch for: a decrease in oxygen level, panting, shallow or noisy breathing, or turning blue.

    Be sure that your baby is examined by a craniofacial specialist.

    Feeding

    Although it is natural to want to nurse your baby, many children with craniofacial conditions cannot breastfeed.

    You may feed your baby with infant formula or, if desired, with breast milk that has been expressed (pumped) and placed in one of the special feeders listed below.

    Adaptive feeding devices with a special soft nipple include the Haberman feeder by Medella, the Ross nipple, the Pigeon nipple, and the Crosscut nipple. To learn more, visit www.childmed.com and www.new_vis.com [LINK] on the Internet.

    Nutrition

    Although newborns with craniofacial conditions do not require extra nutrition, feeding may be difficult at first. Be sure that your baby receives sufficient calories.

    It is standard practice to monitor your child's weight weekly during the first three months of life. Because infants up to three months breathe through the nose, extra attention should be given to your child's nasal and oral hygiene. Talk to your team about saline drops, Vaseline, extra mucus, and swabbing the baby's mouth and nose with warm water.

    Sleeping

    Young babies should be put to bed so that they sleep on their backs. But try to alter the position to avoid flattening of the head. You may want to position toys or the crib itself to discourage the baby from lying in exactly the same position.

    It is helpful and comfortable for babies to have the head slightly elevated while in bed.

    Coming home: social and psychological adaptation

    As with any newborn, bringing your baby home should be a joyous event. It is wise to have a ready supply of infant formula and other supplies on hand. Also, keep dates relating to your baby's immunization schedule and physical exams in a handy calendar. A good general reference book on infants is very helpful and can keep you attuned to your child's developmental stages and their normal time frames. Find a good pediatrician or family practice physician for well-baby care.

    Remember that your concerns about your baby's appearance and developing intellectual abilities are normal. As you spend more time with your newborn, you and your baby will become more comfortable with each other, more trusting, and more attuned to each other. Have pictures taken of you with your baby in the hospital, and make sure to participate in activities that traditionally surround the birth of a child. Share baby pictures with friends and family. Take your child into social settings.

    Within a few months, many parents don't even notice the difference in their child. Bonding is different for everyone, and parents generally progress at different rates, so don't worry if your relationship with your baby occurs slowly. Developing coping skills can take time.

    Remember that the path is towards improvements and health; try to keep optimistic. If you are feeling sad and dispirited for extended periods of time, schedule an appointment with a mental health counselor or spiritual advisor.