Organizations that Have Given Their Heart to Children with CP

What is CP?

CP, formally known as Cerebral Palsy, is the name given to a group of neurological defects that lead to physical disabilities in the course of a child’s growth from infancy through roughly the fifth year, when the diagnosis is fully fleshed out.

The defects are often marked by tremors and loss of sensation, a symptom that also appears in a large number of individuals suffering from early stage Parkinson’s disease. The difference is, those who develop CP do so largely within the first three years.

If undetected at birth, as in the case of athetoid or dyskinetic CP, the affects will appear much sooner, producing difficulty sitting, maintaining a sitting posture without falling over, and walking and speaking distinctly. Because this form of CP affects the tongue and vocal cords, some children may even drool.

CP Types and Symptoms

There are many other symptoms and, in fact, types of CP. Typing is based on symptomatology, and the causes are as varied as the mother developing German measles, drinking alcohol, or taking illicit drugs during the first two trimesters (or six months) of pregnancy. Other causes include (but are not limited to) serious infections like toxoplasmosis, herpes, other sexually transmitted diseases (STDs), poor diet, and exposure to toxic substances. CP may even be caused by multiple births, small pelvis and breech presentation (buttocks first instead of the head). Even low blood pressure and premature birth may trigger the neurological anomaly.

The disease is tragic, turning a beautiful newborn into an uncommunicative, possibly drooling victim when CP is fully diagnosed.  Nor is the mother always to blame. In fact, aside from the obvious triggers – tobacco, alcohol, illegal drugs and unsafe sex – CP is pretty much an equal opportunity brain defect, and even after more than a half-century of research doctors and clinicians are unsure what causes it.

Birth injury is one suspect, as when the placenta is damaged during labor (sometimes by use of a vacuum extractor or forceps, when delivery is breech). Premature delivery in the case of a difficult and premature labor when the fetus is too young to cope with the stresses of life outside the uterus is also suspected.

 Where to Turn for Help

The discovery that a newborn has CP is such a shock to the system some parents never fully recover. In fact, this tiny scrap of humanity, for whom parents have waited almost a year (and in whom resides all their best hopes and ambitions for the future), can tear apart a family faster than more mundane issues like money, infidelity and sexual orientation.

Unable  to admit the awful truth – what they see as some defect on their part(s) – these parents will struggle from day to day, trying to adapt to a care regimen that is nothing like the once described in the baby books. While friends struggle to keep their active two-year-old out of cupboards, rooms and the family dryer, parents of children with CP struggle just to see their baby sit up.

Other parents, firmly grounded and with reliable social safety nets (from workplace friends, high school and college friends, even friends from church or bible study or charitable organization work) will find help, because no one gets through this alone.

That first cry for help may go out to NICHCY, the National Dissemination Center for Children with Disabilities, an information clearinghouse that outlines disabilities and organizations designed to help desperate parents.

The second call will be to the Cerebral Palsy Organization, which offers everything from definitive advice about classifying, or staging, the severity of CP – an essential element to getting help and one which your doctor may not be comfortable making – to a website and call center to answer those pressing questions.

Other organizations include the Cleveland Children’s Clinic, in Ohio, consistently rated by U.S. News and World Report as one of the “Best Children’s Hospitals” for its staff of more than 300 pediatric medical and surgical professionals. Along the same lines, Gillette Children’s Hospital offers a Level I Pediatric Trauma Center in conjunction with Region’s Hospital, the “go to” hospital in St. Paul (Minnesota).

A website devoted exclusively to teen Cerebral Palsy offers chat pages where CP teens can engage one another in conversation about their illness and gain the courage to work harder and face the world. The point? Everyone knows teens would almost rather confront Freddy (A Nightmare on Elm Street) than talk to their parents! A similar site for post-teens is Cerebral Palsy World.

Finally, for those who are financially unable to care for their CP child, cerebralpalsycosts.com offers a wealth of information on how to access various government programs (Social Security Disability Insurance, for example, or Medicaid/Medicare) to fund the more than $1.148 million it costs caregivers to raise the CP infant to adulthood.

These disabled children funding groups include state aid and county aid, but not hospital charitable programs or other charitable institution funding. Do all the legwork, even if you are exhausted, and you may come across a pleasant surprise, like a community hospital which provides indigent or very low income patients with complete financial support except for prescriptions and elective outpatient programs.

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