All Adoption Stories
Family Medical Leave Act
As many of these topics are, cerebral palsy (CP) is a huge topic with a wide breadth of studies and literature with sometimes conflicting views. One of the reasons for this is that CP is a spectrum meaning there are some individuals that are severely affected and others with very mild symptoms. CP occurs in 1-2/1000 full term babies and 5-6 per 1000 premature/low birth weight infants.1
The definition of CP is: a group of disorders that can affect posture and motor (muscle) control from an injury to the developing central nervous system (brain).”2 Children with CP can have some limitations in activity as well as differences in the child’s sensory, perceptive, cognitive, communication and behavioral skills.3,4 In simple terms, CP is a problem that occurs in the brain, prior to birth or very early in life. This injury to the brain does not progress as the child grows (stable or static), and can include difficulty with physical activities with or without thinking/learning issues. There is a spectrum of how much a child is affected.
Some of the major risk factors include being born prematurely, being a twin or triplet, and being small at birth. Another risk factor is the birth mother getting certain types of infections while pregnant. Other statistics seen in CP literature include:1,5
Multiple classification systems6 have been created to help define the severity of symptoms and level of physical function. While widely used by doctors who regularly care for children with CP, these are rarely used in international referrals of children with CP. Instead, we typically look at the developmental checklist and comment on impairments in muscle tone and physical function as well as cognitive or brain effects in the developmental milestones. Age is a big factor in predicting a child’s physical and cognitive function. The older the child is at the time of referral, the more we know about the cognitive and physical skills. Many times, CP will present as low muscle tone (floppy baby) in the first year of life and gradually turns into high tone or spasticity after the 1st year of life. Subtle signs may be harder to note, especially in institutional care. In mild cases of CP, the child may use one hand much more than the other, which may not be identified until the child is older. Because mild symptoms are difficult to pick up when the child is an infant, most mild cases of CP are not identified in the first year of life and some not until 2-3 years of age.
Many services and therapies exist for children with CP. Children with CP often see doctors in many specialties including neurology, neurosurgery, orthopedic surgery, physical medicine and rehabilitation (physiatrist), and ophthalmology. Other doctors may be needed for a child with other medical conditions. In addition to doctors, children with CP benefit from working with therapists to help their physical function. Typically, therapy consists of physical and occupational therapy. The basics of both of these therapies are stretching and strengthening of muscles to help the child’s physical development and living skills as well as therapies for their sensory system. These therapists also provide recommendations for activities that parents can do at home with their child to help his/her development. Both PT and OT work with parents, the child, and the child’s doctor to identify any tools or equipment would be useful to help each child be as independent as possible. This may include foot and ankle braces, walker or gait trainer, wheel chair, bath chair, and adaptive eating utensils and depends on the amount of difficulty he/she has with physical activities. Some children do not require any of these tools or equipment. Speech therapy is another type of therapy that some children with CP may need. Speech therapists (ST) work not only on speech/language challenges the child may have, but also work on eating difficulties.
In addition to therapies, the child’s doctor may recommend medications to reduce spasticity. These medications may be taken by mouth every day, or may be shots into muscles every few months. Some children may need both of these. Other treatments for spasticity include an implantable device that delivers medication directly to the brain (Baclofen Pump) or a surgery on the back that involves cutting some nerves to the legs to permanently reduce the spasticity. Even with these treatments, spasticity can cause muscles to be shorter and tighter than children without CP. This can cause bones to twist. When muscle and bone problems get severe, surgery on the muscles and bones may need to be done. These types of surgery are common in children with CP, and for some, may need to be done more than once.
In summary, there is a wide spectrum of needs and abilities in children with CP. Moderate and severe CP are picked up earlier in life but consideration of the multiple potential learning, physical and rehabilitative needs is important. Older toddlers and children with identified CP may have more available information on what their physical and learning needs may be since we will have more verbal and other milestones to assess. Children with identified CP have a lot of potential to improve their skills with the current surgical, medical and rehabilitative therapies that are available.
1. Britner PA, Morog MC, Pianta RC, Marvin RS. Stress and coping: A comparison of self-report measures of functioning in families of young children with cerebral palsy or no medical diagnosis. J Child Fam Stud. 2003;12(3):335-348.
2. Bax MCO. Terminology and classification of cerebral palsy. Developmental Medicine & Child Neurology. 1964;6(3):295-297.
3. Rosenbaum P, Paneth N, Leviton A, et al. A report: the definition and classification of cerebral palsy April 2006. Dev Med Child Neurol Suppl. 2007;109(8-14).
4. Badawi N, Watson L, Petterson B, et al. What constitutes cerebral palsy? Developmental Medicine & Child Neurology. 2008;40(8):520-527.
5. Odding E, Roebroeck ME, Stam HJ. The epidemiology of cerebral palsy: incidence, impairments and risk factors. Disability & Rehabilitation. 2006;28(4):183-191.
6. Palisano R, Rosenbaum P, Walter S, Russell D, Wood E, Galuppi B. Development and reliability of a system to classify gross motor function in children with cerebral palsy. Developmental Medicine & Child Neurology. 2008;39(4):214-223.
This article was generously shared by Dr. Judith Eckerle of the University of Minnesota, Adoption Medicine Clinic. Child referrals are becoming increasingly complex, and adoption medicine professionals are identifying many more children with special needs from all countries that participate in intercountry adoption, as well as from the United States. To help families prepare for these changes, Dr. Eckerle and other medical specialists are writing a book: Health Topics For Preadoptive Families.
Share in the joy one little girl has brought to this family on the second anniversary of her homecoming
Want to know what to do and not do, during lunch with orphanage staff?
The months after post adoption are ones of adjustments, learning, tears, laughs but mostly love
Since moving to Bethel, Victor has overcome the odds.
A follow up story for a young lady just a few months away from aging out