• Have an OI Child
• Locating a Doctor
• Taking Care
• Recognizing Fractures
• Independence
• Mobility Aids
• Schooling
• Parents 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 Seat 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, and give careful consideration to 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. As with any child, it is important that the child with OI be safely confined in an approved car seat placed in the back seat. For maximum safety, never place an infant or child car seat in the front passenger seat, because airbags can be dangerous, specially for children with OI. As with your car seat, you will need a stroller that reclines considerably and is wide enough to accommodate casts. Sling or umbrella-type strollers are unsuitable because they lack leg support and do not provide good positioning of the spine and head.

Handling

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 or her arms or legs. When you change diapers, lift the baby by the buttocks, 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 placed 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 the 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 pillow-case, and to use this aid to transport the baby. Some parents use a pillow. This type of support can also be used as a base when holding the baby. When a child has a painful fracture, it is usually best to avoid lifting or moving him or her as much as possible. After some degree of healing occurs, the fracture will be less painful, and moving your child will be easier. Unfortunately, leaving your child in one position for a long time can cause skin rashes and sores. Putting a child in different positions not only prevents these problems, but also helps the child develop different sets of muscles, which is important for later mobility.

Clothing

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. Children with OI generally do not outgrow their clothes as quickly as other children, however many parents feel that it helps to increase their child’s self esteem to invest in current styles and fashions. Developing a positive self-image in a child with OI is sufficiently difficult without having the child feel self-conscious about his or her clothes.

Bathing
Most babies enjoy bath time, and bathing can also be one of your child’s favorite activities. Before your child is able to sit unaided, you will probably find it helpful to purchase a molded sponge bathing aid to lay in the bottom of the tub. A popular variety is the kind with the baby shaped cutout. When sitting is feasible, there is a helpful aid called a “safety bath ring,” a circular ring with suction cups that attach to the bathtub floor. It is possible to bathe a baby who is wearing a sling for a fractured arm. Simply leave the sling on during the bath, and replace it with a dry sling after taking the baby out of the tub. Babies who are wearing a cast must have sponge-baths. Be very careful not to get the cast wet. Washing hair is most easily accomplished by placing the baby on the counter top next to the sink and supporting the baby’s head over the sink. You can then spray or pour water to wash the hair.