OI varies significantly according to type, and it is very difficult to predict what symptoms or complications your child will have. Please keep in mind that very few people with OI exhibit all of the following symptoms, and that the severity of each symptom can vary tremendously between individuals. Common features include:
· Bones that fracture easily
· Short stature
· Hearing loss
· Discolored, brittle teeth
· Blue sclera (blue color in the whites of the eyes)
· Skeletal deformities of limbs, chest, and skull
· Scoliosis (curvature of the spine)
· Respiratory difficulties
· Weak muscles
· Excessive sweating
· Tendency to bruise easily
· Loose joints and ligaments
· High-pitched voice
It is important for you to understand that nothing you or your spouse did during conception or pregnancy caused this condition in your child. OI has been prevalent for thousands of years. Genetic counseling, which is available at most hospitals, may help you understand the type of OI your child has. If you are thinking about having more children, you should consider contacting a geneticist, who can help determine the probability of recurrence of OI in your family.
Learning That Your Child Has OI
If there was a previous history of OI in either the mother's or the father's family, you probably have some idea what to expect and how to manage the disease. You should be aware, however, that a child's symptoms and severity may differ from those of the parent with OI; that is, the child may not necessarily be affected in the same way that the father or mother was.
Taking Care of a Child with OI
In most ways, caring for the child with OI is just like caring for any child. There are, however, a few precautions and tips unique to handling babies with OI that we would like to share with you.
Car Seats and Strollers
You will need a car seat to take your baby home from the hospital. Look for an infant seat that reclines as much as possible, with careful consideration of how easily the child can be placed into or removed from the seat. You may want to pad the seat with egg crate foam, available from medical supply stores, or one-inch foam, available from fabric stores. In addition to lining the bottom of the seat, place a layer of foam between the harnesses and the child for extra protection.
Common sense is the best guide when handling a child with OI. Remember that the bones are very fragile and can break with little or no pressure. Be especially careful of the long bones in the body, i.e., the arms, legs, and ribs. You should not lift your baby under the armpits or pull on his/her arms or legs. When you change diapers, lift the baby by the buttocks and not by the ankles, as is customarily done. Spread your fingers apart as far as possible, and put your hand under the buttocks, with your forearm under the baby's legs to prevent them from dangling. To lift the baby onto your shoulder, or carry the baby, use the same technique, but with one hand behind the head and the other behind the buttocks, again with fingers spread as far as possible. When lifting or moving your child, be careful that little fingers and toes do not get caught on clothing you are wearing, such as shirts or blouses that button down the front. Many parents find it helpful to insert a piece of egg crate foam rubber or a thick piece of foam rubber into a pillowcase and use this to transport the baby. Some parents use a pillow. This type of support can also be used as a base when holding the baby.
This procedure is best accomplished by two people. Position the baby on his/her back on a pillow or a covered piece of foam rubber. Turn the baby's head to one side. Then place a second pillow or piece of foam on top of the baby, sandwiching the child. With one person at the baby's head and the other person at the feet, each person places one hand under the bottom pillow and the other hand on top of the upper pillow and, at the count of three, the child is flipped onto his/her tummy. Be sure both participants agree beforehand on the direction that the baby will be turned. This method, although a little awkward, provides you with a way to change the baby's position without causing unnecessary discomfort.
Children with OI are frequently affected by warm temperatures and are often bothered by excessive sweating. Lightweight, cotton clothing seems to be the most comfortable. Look for clothes with buttons or snaps down the front and at the crotch. Many parents fashion cast underwear by placing snaps or Velcro at the crotch of their child's underwear to simplify toileting.