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Caring for a Newborn
All About OI
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That First Diagnosis
Our Little Snowflakes
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Finding a Good Local Doctor
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For Medical Professionals
Caring for a Newborn

OI Children are like snowflakes-----no two are just alike.

Fractures can occur shortly after birth, and unfortunately these can sometimes be caused by the way hospital staff handles infants. In order to try and reduce the incidence of early fractures, there are a few simple guidelines that may be followed:
  •  An unborn infant of known OI parents will have a 50% chance of also being affected by the condition so it is always safer in these cases for the child to be born by Cesarean Section to reduce the risk of fractures during delivery.
  • The newborn baby should be handled and examined very gently, and when being weighed and measured the baby should be placed on a padded level surface.
  • Under NO circumstances whatsoever should an infant suspected of having OI or of OI parents, be routinely tested for Hip Dislocation.  This this can cause severe fractures of the femurs and ankles, so if there is any doubt at all if the child could be affected – play safe, and don’t do the test.
  • An infant suspected of having OI should NOT have their blood pressure taken with a blood pressure cuff. This can cause fractures to the limb on which the cuff is placed.
  •  When an infant who is suspected of having OI is being x-rayed, great care must be taken when lying the child on a hard table so as to avoid further injury. Never assume the x-ray tech knows how to handle your baby. If possible, the parent should be the one to position the baby for x-ray.
  •  Head, trunk and buttocks should be evenly supported when lifting an OI child as grasping under the arms or around the ribs can cause unnecessary rib fractures.
  • Parents must have the opportunity to talk with staff especially at this time, when they may be in need of advice and support, there are also support groups that families can be referred to.
  • Until you learn how fragile your childs is dress your baby in loose fitting clothes. Clothing that snaps completely up the front is perfect. Take great care not to push or pull the limbs though sleeves or pant legs, gently guide the clothes over the limbs.
  •  When recovering from fractures OI babies can spend much time in one position, usually on their backs.  As a result they can quickly develop a flat head. When they are feeling good and fracture free, try to encourage them to move their heads from side to side by providing interesting things for them to look at on each side of their crib( for example, mirrors, baby aquarium, mobiles). When they are very young you can gently place them on one side and place a rolled blanket behind their back for support. Later turn them, to the opposite side.
  •  It is important for babies with OI to be held and touched by parents and other caregivers, and that they be allowed to explore independent movement. Supporting infants in a variety of positions (e.g., side lying, stomach lying) develops muscles that will help with sitting and standing later on. Fractures will occur no matter how careful you are, and the physical and emotional benefits of touch and movement usually outweigh the risks.
  • Never allow your baby to lie in a "frogleg" position.  Use towel rolls or blankets and pad the carrier,swing or car seat to position the knees close together.  This alignment will prevent contractures and problems later when your baby is ready to stand and walk.

Our mission is to provide caring personal support, empowering information and unwavering hope to persons caring for a child with OI.