This summer traveling in China with Superkids I met a girl with Osteogenesis Imperfecta (OI). This was remarkable in itself because I have only met maybe 20 children with this special need in my 25+ years as a physical therapist. I have a special place in my heart for ever child with this special need. The children I have worked with who have OI are such treasures. They have been smart, funny and in general just amazing. I became aware of this girl only through a parent who had picked up her child and met an older girl with the same special need. Since then I have been working on helping all children with this need to find their forever families.
It is becoming more common to see this special need on Waiting Children lists from China. It is also called brittle bone disease and in China sometimes, Cristal bones.
OI is a difficult special need to wrap your head around. It means that you do not need a trauma or accident to break a bone. Sometimes it just happens. It can happen with standing, with lifting an arm or just in activities of daily life. Sounds scary but in fact it’s a need you get used to. Often signs a child has a fracture may be irritability, or a fever. Sometimes a fracture is not registered by the child or may be a minor fracture so the child will not tell the parent
OI is a genetic disorder that can be inherited or caused by a new genetic mutation. About 35 percent of the cases are children born to parents who have no signs of the disease. In this group, the gene may have undergone a new mutation or from a recessive (unexpressed) gene. The cause of OI is an error on a gene that affects the body’s production of the collagen found in bones, and other tissues. It is not caused by too little calcium or poor nutrition. Because collagen is present in other areas of the body, other systems are affected. Incidence figures vary but there are reports of 6-7 people in every 100,000 have OI worldwide. It affects boys and girls equally. There is a classification system for OI but it is often not used in adoption files due to information needed from bone or muscle for the test.
Those with OI may have muscle weakness, loose joints, bruising and brittle teeth. There can also be hearing loss, and sometimes the white part of the eyes are blue. In individuals with severe OI there could be respiratory issues. Over time in certain types of OI, there can be bowing of the long bones and/or shortness of stature. Most children with OI can live a normal life span. OI does NOT affect intelligence. A child does not need to have an injury to have a fracture. Bones may break during normal activities. Sometimes when children fracture a bone, they cannot figure out what is wrong but are irritable.
Current treatment includes medication to help strengthen bones like pamidronate. Children with frequent fractures of the long bones in the arms and legs may have metal rods placed in the bones to prevent bowing. Treatment also focuses on increasing mobility and maximizing what a child can do. We have learned that standing and weight bearing activities strengthen bones. Exercise also strengthens bones.
What does life look like with OI? While exercise is encouraged, high risk activities like certain sports and activities that could cause falls should be avoided. Walking is common but some children use wheelchairs. Physical therapy is helpful in establishing a safe exercise program. OI can vary in severity, due to its genetics, from mild to severe. Children with mild OI may have few fractures and may not be diagnosed till they begin walking. Severe OI may be diagnosed at birth. While OI seems scary, parents report that they get less anxious about the fractures. Children with OI can still be held and cuddled. They can go on to live rich fulfilling lives, all they need is… Love.
For more information on Osteognensis Imperfecta you can visit the OI foundation.
~Guest Post by Patricia
Waiting Children with OI
This smiley little guy was born on Septemberof 2006 and was admitted to the child caring institute on November 9, 2009. He is a little bit shy and very smart. He is described as curious about new things and likes to ask “why?” and “what?” Upon admission he was diagnosed with congenital osteogenesis imperfecta (sometimes known as “brittle bone disease”) and dysfunction of the lower limbs. A report dated May 2011 states that his condition does not affect his daily life. He has good self-care ability. He can eat, dress, and take off clothes by himself. The report states, “He can walk alone at ease with hands handle the wheel chair.” [We believe this means he can not walk but rather gets around in his wheel chair, though we do not have confirmation of this at this time.] He can talk with people in complete sentences and is very fond of listening to stories told by adults and playing with adults. He also likes to play with children and gets along well with them. He can count and tell 1-10. He likes to draw, listen to music, read, and watch pictures. He is very good at making products by hand. He likes to make crafts. He is not picky with his food choices, but he doesn’t eat a large amount of food. He likes bananas best. Luke is listed with Hand in Hand International, please contact them for more information.
Abe was born August of 2008 and is on the shared list. Abe is more capable now and he is somewhat naughty. Now we train him using a spoon to eat as well as potty training. Now he could stand up while holding onto the bedrails and support himself with both legs, grasp a pen drawing lines on a piece of paper, love fresh new things. He can play trains with rails, ferrules, matching of shapes. Now, if you do not feed him food first, he would get mad in that he cries or lowers his head quietly. However, if you talk to him patiently telling him to wait for a second or put him on a chair close to you, then he stops crying. Personality and hobbies: active, restless, extroverted. He loves playing with balls and crawling on the ground.
Henry was born January of 2004. He is on the shared list and is from Guangdong province. WACAP has offered a $4,000 promise child grant for him before and they would offer it again for him if a family adopted him using WACAP, but since he is on the shared list, a family can use any agency to adopt him. Henry likes to be involved and when he sees other children dancing, he will wave his hands since he cannot get up and join them. He gets around by kicking the floor to push his chair. He can walk a little holding on to something, but can’t walk independently. Henry gets nervous when people touch his legs. He can go to the bathroom by himself by holding on to things. He is described as a very quiet artistic boy. Henry likes singing, drawing and other art projects. He has had many broken bones. In 2007, he broke both legs spontaneously. He recovered by lying in bed and wearing braces. He usually attends the first grade at the special education school where he is average in his class. When he is not at school, he likes to draw his friends.
Suzanna is a sweet almost six-year-old girl. She uses a wheelchair for mobility. Her special need is Osteogenesis Imperfecta or brittle bones. She can speak with age appropriate sentences and grammar. A teacher comes to her room to work with her. She enjoys watching TV and watches to occupy her time. Her favorite color is red. She was just discharged from the hospital because of fractures of her left hip and shoulder. Suzanna needs a family to help her Live a fulfilling life. She needs nurturing and the opportunity to play and develop. Her arms and legs are quite weak and she had difficulty with any play activity due to weakness. Suzanna is a beautiful girl whose greatest need is a forever family. Could she be your Daughter? Contact Patricia for more information.
For more information on beginning the adoption journey contact The Advocacy Team.