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She was delivered via c-section due to low amniotic fluid and breech
presentation. At birth, she was folded in half with her legs extended, crossed at the ankles, with her feet at her head. Her first and pinkie fingers overlapped her middle fingers on both hands, and some fingers would not bend. Her middle fingers were pressed into her palms and very difficult to open. She spent her first two days in the Level 2 nursery because of her “wet lungs,” but overall, she was a healthy and happy baby. Basic genetic testing was done immediately, as her overlapping fingers were a common feature for Trisomy 18, a deadly chromosome disorder. That test, and almost every test thereafter, came back negative. She continues to be our mystery girl. Olivia began receiving physical therapy and occupational therapy before we left the hospital. At that time, we really believed a few months of therapy would likely solve all of her stiffness issues, and her fingers were our biggest concern. When Olivia was a few weeks old, during an appointment with a pediatric orthopedist, we first heard the word “arthrogryposis.” For the next two years, our days were filled with many therapies, and we saw improvements with Olivia’s range of motion and decreases in the stiffness of her joints. Olivia’s left hip was out of socket, so she had surgery at eight months old to correct this issue. She was in a body cast for two months. Her hip is showing great progress years later. With AFOs (ankle foot orthodics) and a walker or parallel bars, Olivia was able to take some steps. Then, just before she turned two, she was very sick with a stomach virus, and we saw a six-month regression of skills. This was heartbreaking, but Olivia suddenly developed a desire to crawl, which has been a blessing, as it is her most common form of ambulation now, and it also provides active stretching and movement of her legs and hips. Olivia does not walk at all without being fully braced from her hips to her feet, and even then only takes a few, slow steps. Her legs will not straighten completely, even with stretching and bracing. This limits her ability to stand and step. Olivia had very few words at the age of two and had never said “mama” or “dada.” But, doctors and therapists assured us that speech would come, as it was very common for children who were focused on improving physical limitations often were slower to progress in other areas. Yet, as time went by, we began to notice more and more traits that seemed “autistic.” Olivia didn’t socialize much at all, had inconsistent eye contact, flapped her arms, and lacked progress in speech. However, at the age of three, she suddenly started reciting most of the alphabet… backwards. She began banging her head when she was upset or over-stimulated. She rocked on the steps. She could “sing” the tune and clap to the rhythm of any song, but she had no words to tell us she was hungry. There was no pretend play and instead she would empty her bookshelf, looking at each book before tossing it aside. Experts would acknowledge autistic traits, but not autism. But as these traits continued to accumulate, we felt certain that our daughter was, in fact, autistic. When Olivia was five, we had a formal autism evaluation completed, and our suspicions were confirmed. Olivia is low-functioning autistic. This journey with arthrogryposis and autism has not been an easy one. But it has been filled with countless blessings. We recognize that our family has been designed perfectly by God, and we strive every day to bring glory to Him. We are in awe as we watch how God is shaping our lives and the life of Olivia’s big brother, Jacob. We often say that even though our girl has very few words, God speaks through her every day. We will soon be traveling to Seattle, Washington to attend the quarterly Arthrogryposis Clinic at Seattle Children’s Hospital. This clinic will enable us to spend the day with a team of doctors and specialists who are very familiar with arthrogryposis. This will be our first visit to an AMC clinic, and we are looking forward to discussing the progress and plans for Olivia’s care. As most AMC children have normal intelligence, we hope to inquire about other people with AMC who also have autism or autistic traits. We also hope to investigate possibilities for treatment for Olivia’s knees/legs that might enable her to walk. Your support and donations enable us to make the trip to Seattle. While we have always said that we would do whatever it takes to meet Olivia’s needs, there is great peace in having financial support for an expensive trip like this. Funding will go directly to the cost of the flight, the hotel, and any related costs. We also look forward to helping other special needs families in the future. We know that you are the hands and feet of God, helping others when they need it, and we hope to support others the way you have supported us. Thank you!
Brian & Donna Murray
Read more about our family on our blog: http://donnamurray.blogspot.com/
Arthrogryposis, or arthrogryposis multiplex congenita (AMC), is a generic term used to describe the presence of multiple congenital contractures. The word arthrogryposis, arthro= joint, gryp=curved, literally means curved joint (implying that it is fixed or stuck in the curved position). Thus, arthrogryposis multiplex congenita means curved (fixed) joints in many (multiple) areas of the body, which are present at birth (congenita). A contracture is the limitation of movement of a specific joint, or in other words, a joint that does not have a full range of movement. The contractures in most forms of arthrogryposis are usually nonprogressive and involve more than one body area. Arthrogryposis is really more of a description than a diagnosis, as most people have AMC as a result of another condition. People with arthrogryposis usually have normal or above-normal intelligence. Arthrogryposis is relatively rare. It has been estimated to occur once in every 3000 live births. Anything that causes decreased fetal movement or prevents normal fetal movement may lead to contractures in the newborn. Any limitation of movement of the fetal joints, even for relatively short periods of time, such as a few days, may result in fixation of the joint. In general, there are six major categories of problems leading to limitation of movement in an embryo or fetus: abnormalities of the muscle structure or function, abnormalities of the nerves that connect to the muscles, abnormalities of connective tissue, limitation of space or restriction of movement within the uterus, vascular compromise leading to loss of neurons, and maternal illness leading to contractures. Surgery, stretching, range of motion and physical therapy are currently the cornerstone in management of AMC. Joint contractures can be difficult to manage. Regression of gains made through surgery, physical therapy and stretching is a common occurrence and happens because as the child with AMC grows the connective tissues may not be able to lengthen at the same rate as the child’s growth causing joint contractures to recur. With proper treatment, most children can make significant improvements in their activities of daily life. For more information about arthrogryposis, visit http://www.amcsupport.org/
Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors. Autism statistics from the U.S. Centers for Disease Control and Prevention (CDC) identify around 1 in 110 American children as on the autism spectrum. Studies also show that autism is three to four times more common among boys than girls. An estimated 1 out of 70 boys is diagnosed with autism in the United States. There is no one cause of autism just as there is no one type of autism. Over the last five years, scientists have identified a number of rare gene changes, or mutations, associated with autism. A small number of these are sufficient to cause autism by themselves. Most cases of autism, however, appear to be caused by a combination of autism risk genes and environmental factors influencing early brain development. Each individual with autism is unique. Many of those on the autism spectrum have exceptional abilities in visual skills, music and academic skills. About 40 percent have average to above average intellectual abilities. Indeed, many persons on the spectrum take deserved pride in their distinctive abilities and “atypical” ways of viewing the world. Others with autism have significant disability and are unable to live independently. About 25 percent of individuals with ASD are nonverbal but can learn to communicate using other means.
For additional information about autism, visit http://www.autismspeaks.org/what-autism