Urge Congress to Fund Cerebral Palsy Research

Cerebral palsy affects more children than muscular dystrophy, multiple sclerosis, cystic fibrosis or childhood leukemia. But CP receives only a fraction of the government research funding these other disorders receive. I wish I knew why. I only know it isn’t right.

Not that these organizations deserve any less research support. I just believe cerebral palsy should warrant more attention. In the U.S., 1 in every 303 eight-year-olds has cerebral palsy. The odds are 1 in every 270 among African-American children. Yet, the cause of 80% of CP is still unknown.

I work with families of children with cerebral palsy on a regular basis. I know what kind of challenges they face, and what it costs to provide children with the kinds of therapies and services they will need the rest of their lives. I present these numbers in courts and around settlement tables. I am well aware that science has not found a way to prevent most cerebral palsy, or to cure it.

Without more research funding, it is unlikely this will occur anytime soon, which is a travesty. Dedicated research funding is practically nonexistent, according to the Academy for Cerebral Palsy and Developmental Medicine. The Centers for Disease Control and Prevention (CDC) has no specific funding for CP, and funds dedicated for CP by the National Institutes of Health (NIH) (only $22million for this year) is not for innovative, curative research, the academy notes.

Today is National Cerebral Palsy Awareness Day. Do your part to urge Congress to dedicate more funding to preventing, curing and developing effective therapies for cerebral palsy. Contact your elected officials. The 800,000 Americans who are living with CP today are counting on you.

For more information about the causes of cerebral palsy, read my blog “Your Child’s Cerebral Palsy: Preventable Mistake or Not?“

Let’s Talk About Cerebral Palsy Myths

In acknowledgement of National Cerebral Palsy Awareness Day on March 25, I wanted to talk about some common CP myths: children with cerebral palsy are mentally disabled, will never walk or talk, can never live independent lives, and developed cerebral palsy from an unknowable and unpreventable neonatal condition.

The thing about myths is that they originate in a grain of truth. Although cerebral palsy, by definition, is a disorder that affects motor function, some children with CP also experience damage to the part of the brain that controls thinking. They suffer from lifelong cognitive disabilities. Others, because of the extent of damage to the area of the brain that governs movement, will need a walker or wheelchair to get around, and may need technical aids to help with speech.  And yes, the reason why some children develop CP is never determined.

But, the bigger truth about cerebral palsy is that it is a disorder characterized by a range of function, from mild to severe. Many children with CP are very bright. I read a story recently about Mike Berkson, a college student with CP who compares himself to a blind man: his lack of one sense has given him heightened capabilities in other areas; in his case, diminished motor capacity has led to heightened mental acuity. Berkson, while confined to a wheelchair, has made headlines with his insights into friendship and living as a person with disabilities.

By far the most common challenge faced by a child with CP is learning to walk, and then to walk with a steady gait. But many do, to the extent that you wouldn’t know they were ever impaired. This goes for talking, too. Just Google “famous people with cerebral palsy” and you’ll find a long list of actors, authors, artists and comedians.

The last great myth about cerebral palsy is that it is never the result of doctor, nurse or hospital error.  According to the medical community, the origin of cerebral palsy is mostly a mystery, but never anyone’s fault. This argument becomes full-throated when it comes to evidence that labor and delivery staff misinterpreted tracings from an Electric Fetal Monitor (EFM) showing the fetus was in trouble and failed to take the required action.

I regularly disprove this myth and others in court. (You can read more about this issue in my article “How Electronic Fetal Monitoring Can Prevent Cerebral Palsy” that first appeared in CP Magazine.) I present evidence that shows if a doctor or nurse had followed approved medical procedure, a lack of oxygen to the fetus and brain injury would not have occurred and the child would not have cerebral palsy. A winning verdict or settlement provides the family with the money they need to care for a brain-injured child the rest of his or her life, which is the fair and just outcome.

Join me in cerebral palsy “myth busting” this week. Wear a green ribbon to show your support of the cerebral palsy community.

Howard Janet has been representing plaintiffs in complex civil litigation for more than 30 years in the areas of medical malpractice, birth injuries, “whistleblower” lawsuits, and environmental litigation. Best Lawyers in America® honored him as the 2012 Lawyer of the Year–Personal Injury, Baltimore, MD. READ FULL BIO

Visual Issues in Children with Cerebral Palsy

By John Lehman

Studies have indicated that as many as 75% of children suffering from cerebral palsy have vision impairments of some kind. Sense of sight is an important part of a child’s development, and for children affected by cerebral palsy, detecting vision issues early is critical. Any information you can arm yourself with brings you closer to providing your child with a happy, functional life as he or she grows older. Below, we have identified several vision disorders in children with cerebral palsy and options to treat them.

Types of Vision Disorders

There are many different vision disorders that can result from cerebral palsy, although many share similar forms of corrective treatment.

Cortical Visual Impairment (CVI)

Perhaps the most common condition associated with cerebral palsy. Also called Cerebral Visual Impairment. CVI is categorized as more of a brain dysfunction rather than a direct problem with the eyes. Those suffering from CVI may experience symptoms such as frequent visual fatigue, abnormal responses to light, unusual eye movement, as well asother issues.

Acuity Loss

Acuity loss generally refers to blurred vision. The most common types of acuity loss are nearsightedness and farsightedness, both of which are typically treated by prescribing glasses or contact lenses.

Field Loss

This refers to a group of dysfunctions in the eye’s field of vision. Types of field loss include:

• Central Loss – Visual impairment in the center of the field of vision.
• Hemianopia – Visual impairment on either the upper-lefthand, upper-righthand, lower-lefthand or lower-righthand side of the field of vision.
• Island of vision – Most vision is missing, save for some isolated spots in various places.
• Peripheral loss – The sides of a person’s vision are missing. This is similar to tunnel vision.
• Scotomas – A reversal of “island of vision.” Vision is mostly clear, save for some isolated spots in various places.

Amblyopia

This condition is common amongst children with or without cerebral palsy alike. This condition is also called “lazy eye.” The eyes have difficulty processing depth of field and one eye will have poorer vision than the other.

Detection of Vision Issues

It’s very important to detect visual impairment in your child as early in their development as possible. As a parent, it’s very likely you will notice the signs before your doctor diagnoses a vision disorder at a routine check up. Common signs include frequent rubbing of eyes, difficulty tracking objects, consistent red eyes and other eye problems. If you suspect your child is developing vision issues, consult your child’s doctor or an optometrist as soon as possible.

Treatment Options

Thankfully, most of the vision problems related to cerebral palsy are very treatable and the procedures are not much different than treating common vision issues. Prescriptions for glasses with corrective lenses or contact lenses are common treatments for many of the vision issues children with cerebral palsy will face.

Children with cerebral palsy who have also been diagnosed with CVI usually face a more involved and routine treatment plan. At an earlier age, some doctors recommend vision stimulation therapies to ensure the best possible development of your child’s visual skills. If your child’s visual skills have not advanced very far before they reach age 10, it may be necessary to begin training your child to use non-visual ways of communication, reading and writing. These could include using text-to-speech software or Braille. Your child’s doctor or optometrist should be able to recommend a program based on your child’s specific needs.

Further Reading

Cerebral Visual Impairment – SSC

Vision Problems – WebMD

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Are Home Births Safe?

By Giles Manley, MD, JD
Medical Director for the Cerebral Palsy Family Network

View similar stories.

I was surprised to read recent statistics from the Centers for Disease Control and Prevention that home births are growing in popularity. I would have thought the opposite, given that most hospitals go to great lengths to provide comfortable and nurturing environments for laboring mothers and are the best equipped to deal with emergencies. Also, most insurance companies will not cover a home delivery.

According to the people who examine such trends, the primary reason seems to be women – mostly the older, more affluent, and those who already have had children – are looking for a more “intimate experience.” They may also have concerns that hospital-based births tend to be accompanied by more interventions, such as C-sections.

As a board-certified practicing obstetrician for more than 20 years, I can only speak to what I know. In my opinion, I would not recommend home births.

Yes, 90-95% of home births are going to be fine, assuming the mother is healthy with no known health risks, has experienced uncomplicated pregnancy and delivery before, and that a certified midwife is in attendance. But why would a mother take even a five percent chance that, should something go wrong, she wouldn’t be where she and her baby could get the best care? When a baby inside the womb gets into trouble, even minutes can make a critical difference. The same holds true for women with bleeding complications. Will the baby experience permanent brain injury, or will mom bleed out, while being transported to a nearby hospital?

Recommendations for a Safer Home Birth

Still, sometimes I still get asked about home births and what I would recommend to make them as safe as possible. Here’s what I say:

• First, consult with an obstetrician and be checked for any pregnancy health risks, such as smoking, diabetes, heart disease, RH factor, previous C-section, or if you are over 35 and this is your first child.
• Make sure your midwife is certified.
• Make sure your midwife has a back-up physician at the nearest hospital.
• Know exactly which ambulance company serves the hospital nearest you.
• Make sure the midwife has resuscitation equipment, such as an AMBU bag, along with oxygen, in case it’s needed.
• A better option than a home delivery would be a birthing center. These are usually affiliated with a hospital and have on-site ambulance service.

A number of inquiries involving botched home births have come across my desk as a birth injury attorney. Unfortunately, since the midwives involved in these home births did not carry malpractice insurance, we had no way of helping these families recover any money to help care for their injured children. It’s just one more consideration when thinking about a home birth. Although the chance of something going wrong with an otherwise healthy patient and pregnancy is slim, an unforeseen complication could prove disastrous. Why take the chance?

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Musician With Cerebral Palsy Advocates Against Bullying

Check out how this awesome musician with cerebral palsy stands up for kids who have been bullied. Read more about his music and passion for those with cerebral palsy in our latest "In the News" article. 

http://www.cpfamilynetwork.org/in-the-news/musician-with-cerebral-palsy-advocates-against-bullying