Are Home Births Safe?

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

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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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Electrical Muscle Stimulation Treatments for 
Cerebral Palsy

By John Lehman

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Electrical Muscle Stimulation (EMS) refers to a group of treatments that make use of electrical current to stimulate nerve endings, with the aim of reverting damage to the patient’s nervous system. Children suffering from cerebral palsy often have issues with movement and muscle spasticity, and EMS has proven to be effective at treating these issues, improving their overall quality of life. Combined with physical therapy, research has shown that EMS can increase walking speed, reduce muscle spasticity and improve overall motor function.

Types of Electrical Muscle Stimulation

EMS can be broken down into two main categories:

• Neuromuscular Electrical Stimulation (NMES) – Also known as Therapeutic Electrical Stimulation (TES) or Functional Electrical Stimulation (FES). This form of the treatment is usually provided by a medical practitioner. Unlike Threshold Electrical Stimulation, NMES uses a higher voltage in shorter increments, with the aim of stimulating muscles to contract.
• Threshold Electrical Stimulation – This treatment differentiates itself from NMES, as it does not induce muscle contractions. Instead, a lower voltage is used over a long period of time. Patients can purchase devices for this treatment without a prescription and use it at home, typically while sleeping.

How EMS Works

Whether treating cerebral palsy or other motor dysfunctions, EMS follows the same procedure. First, electrodes are placed on the skin near muscles that have atrophy or are weaker than their counterparts. These electrodes are attached to a small electric generator, operated by patient (or in this case, the parent), or by a medical practitioner.

As mentioned before, Threshold Electrical Stimulation is usually performed at home, with the parent sending minor amounts of electric current through the electrodes over the course of several hours. With NMES, the patient is subjected to a slightly higher level of current, which coerces the muscle to contract. In either case, the electric current is mild and should not cause any pain or discomfort for your child.

How Effective is EMS?

Although doctors can usually agree on the benefits of EMS, many find that the therapy is unnecessary or unreliable since it does not produce permanent results. EMS typically needs to be conducted over a long period of time, as a single session of EMS will only temporarily improve motor function in the patient. Marked improvement is usually seen after the patient has undergone treatment between one to three months, with 2-hour sessions every day. Any prolonged breaks from the treatment may result in your child’s spasticity returning to an abnormal state. Because of this, many patients undergo the treatment throughout their life.

Although research is promising regarding the use of EMS for cerebral palsy patients, most research suggests that it is supplementary to standard treatments. Typically, EMS is combined with exercise or some other form of physical activity, depending on the child’s muscle condition. Some studies suggest that EMS alone can be used to treat smaller muscle groups, such as forearms or wrists. For larger muscle groups, such as leg muscles, EMS would be combined with another form of physical therapy.

Nevertheless, research is ongoing as to whether EMS can stand alone as an effective treatment for cerebral palsy and issues with motor skills. Ask your child’s doctor about EMS and whether it could help your child’s spasticity.

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Columbia Launches Center For Cerebral Palsy Patients

October 30, 2012
By V.L. HENDRICKSON

When Debby and Peter Weinberg’s son, Henry, was diagnosed with a rare form of Cerebral Palsy when he was 3 months old, the family was lucky to able to turn to the doctors at Columbia University Medical Center for care. But, as Henry approaches adulthood, he has far fewer options for care.
“Ninety percent of CP patients now live until adulthood,” Mrs. Weinberg said. “That wasn’t always the case. Now there’s a big population of patients living to adulthood and no one was focusing on them. The focus was always on pediatrics.”
“Cerebral palsy is a little bit of an orphan disease, and hasn’t attracted a lot of attention over the years,” said Mr. Weinberg, who is a founding partner at Perella Weinberg Partners LP, a global financial-services firm. The center is a collection “of efforts to help people with CP with their issues.”
Patients with cerebral palsy, a group of disorders that affects speech, movement and cognitive function, often need special treatment from doctors experienced with the range of complications that can arise from even routine operations. Mrs. Weinberg relayed the experience of one adult CP patient, in need of hip surgery, who was referred by an orthopedic surgeon to a pediatrician who had experience with CP. The pediatrician, of course, wouldn’t operate on an adult. Fortunately, the patient was able to get care at Columbia’s new center, which has already begun reaching out to the CP community.
In addition to providing treatment for patients of all ages, the center, led by Dr. David P. Roye Jr., the St. Giles professor of pediatric orthopedic surgery at CUMC, will also help coordinate care for CP patients, educate their families and caregivers and conduct research. Doctors will study the impact of various treatments, to see if they make patients “more mobile, more independent, more pain free,” said Mrs. Weinberg. “If they give patients a better quality of life—that’s the goal.”
In addition, a patient registry of CP patients has been established at the center, providing valuable data for doctors and researchers all over the country. “The patient registry is in its infant stages, but it’s already the largest in the country,” Mrs. Weinberg said. “Lack of data has always been a problem.”
Henry, the Weinberg’s son, is now 17 years old and thriving in high school. But the family, who live in Greenwich, Conn., is relieved to know he will continue to have access to the best doctors as he becomes an adult. “There’s a lot of anxiety on the part of parents as to where their children will get care,” Mrs. Weinberg said.
The new center, a celebration of which was also scheduled for Tuesday, but will be rescheduled because of inclement weather, will help alleviate that anxiety for families all over the New York region.

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For more information on Cerebral Palsy please visit:
http://www.cpfamilynetwork.org

Dr. James Klausner: Conductive Education

September 12th, 2012
By Danielle Torrent
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James Klausner wasn’t looking for an additional career when he decided to start a rehabilitation program for kids with Cerebral Palsy. He already was quite busy with his day job as a lecturer at University of Florida and a physicist. It would be enough to nominate him for the Spirit of Gainesville award for his work as a professor. But he wanted to help kids in Gainesville, kids just like his son, who passed away at age six. He wanted to make them mobile, more independent, educated and accomplished. Hopefully, he would help them walk. In 2006 he started The Gainesville Conductive Education Academy. With a program modeled after the world famous Peto method, James Klausner took on a second day job without pay. He never turned a child away and as the head of The Jordan Klausner Foundation created in his son’s memory he tried with all his might to balance his need to help the local community with ever limiting funding to keep the facility running. Conductive Education is a method very little known in America, but quite popular worldwide, especially in the 1980′s. It doesn’t enjoy the financial support of insurance or the recognition of the US medical community. Conductive Education was developed in Hungary in the 1940′s. The theory behind was that people with neuromuscular disabilities can learn and improve through routines, movement and repetition. James wanted for the parents in Gainesville to have it as an option, to have the information and then make choices. He created an Academy that was free for most, affordable for the rest and he persuaded a Hungarian conductor, Kata to join his cause.

Dr. James Klausner

25 years ago I was just like the kids James Klausner has helped in Gainesville. I know what it did for me. I know what it’s like to fight with limitations of your own body only to raise above it and get better. Today I’m an attorney. Cerebral Palsy never goes away, of course I can see, but you can limit the way it affects you. That’s what James Klausner tried to do, against the odds, by bringing the approach that helped countless kids to Gainesville. To give them the gift of mobility. And also to start the discussion about the education and therapy choices in America and how we view Cerebral Palsy today. He didn’t make CE widespread, but he got his foot through the door.

This is our last chance to honor Dr Klausner’s efforts. After years of struggles the school has shut down this year. I know it was not an easy decision for him. It’s not that Cerebral Palsy is no longer a concern in Gainesville, but the logistics, the finances, the economic crisis we all live in, finally became too much for this one person, who tried to make a difference. He sacrificed a lot of personal time, energy and money. He thought of others first.

Last year I was nominated for the Spirit of Gainesville award, for my work with the school. But James is the true champion of Conductive Education. I’m just a success story. He has inspired me to help others like me. At the school little miracles happened daily. Yet, the media mostly ignored him. This is our chance to correct it. The school has closed but his efforts were not a failure. Not to his students, his other students, those who now walk, speak and move. Not to me, as I build by career around disability law issues and all the others he has touched. The school has closed, but the Foundation will continue, James assured me. For Jordan and for other kids in Gainesville.

Second Nomination

By day, James Klausner plays the role of what many people would call a rocket scientist. A professor of mechanical and aerospace engineering at the University of Florida, his research in thermal fluid sciences has landed him positions on panels for NASA and the National Science Foundation, and resulted in numerous awards and recognitions for his theoretical and experimental work on heat flow transfer. But the rest of the time, Klausner is focused on improving the lives of children with neuromuscular disabilities in Gainesville and surrounding areas.

In 1999, he established the Jordan Klausner Foundation in memory of his son, Jordan, who was afflicted with cerebral palsy. The foundation is a 501c3 nonprofit run primarily by volunteers that offers a range of services to the disabled community in North Central Florida, including educational opportunities for children, advocacy and legal services. It is mainly supported by parents and relies on grants, donations and McKay scholarships for funding. In 2006, Klausner opened the Gainesville Conductive Education Academy, a Florida charter school that combines rehabilitation and education to help children become more functional and independent. The key to Conductive Education is having children follow carefully designed scripts of exercises to make them stand, move and walk with the use of specially designed furniture that also serve as rehabilitation tools. The facility applies the therapy method developed in Hungary in the 1940s by Andras Peto. Over the decades, Peto’s Institute in Budapest has become a popular destination for Cerebral Palsy parents from all around the world, with many witnessing great progress in their children’s walking, talking and other functionality skills. The Gainesville Conductive Education Academy’s instructor, Katalin Szcoboda, received training for this method in Hungary. The school’s goal – unlike the outcome of many public schools, which results in disabled children becoming dependent on wheelchairs and classroom aides – is for children to become as independent and as functional as they can be. The Jordan Klausner Foundation’s motto states: “Helping special children help themselves.” The school operates year-round, providing otherwise unavailable educational options for North Central Florida’s population of children with disabilities and their families, with the ultimate goal of incorporating students into the public school system. Students have commuted from Orlando and as far north as Georgia to participate in the academy’s summer camp, as there are no other Conductive Education facilities available in the area.

Cerebral Palsy is an umbrella term for a number of neuro-motor disorders involving brain injury at birth or during pregnancy. An estimated two-to-three live births per thousand are diagnosed with the condition, with some studies suggesting raised rates in recent years. It affects children in all countries and all social groups. The condition mostly affects walking, control over limbs, balance and speech and in most cases, renders the body spastic. James Klauser has devoted an immeasurable amount of time and personal sacrifice to get the foundation and school off the ground, organizing fundraising events, applying for Federal grants and ensuring the students have a safe, welcoming facility to attend. He is committed to helping kids in the community and building a sustainable organization that will be able to help generations of families. For more information, please visit www.jordanklausnerfoundation.org.

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Tips for Writing Letters of Medical Necessity

Letters of medical necessity are critical to getting reimbursed for any equipment or service. These are letters from your doctor or therapist. Such a letter must include certain, specific information or it will automatically be denied.

Many doctors and therapists are familiar with what needs to be in a letter of medical necessity. But if they don’t send the right information, it just means a longer delay and headache for you. Don’t take that chance.

You can help by writing down the answers to as many of the questions below as you can and giving it to your doctor or therapist. This will save them time and hopefully speed the process along.

1. Patient name, diagnosis, and the date the doctor prescribed the service or equipment needed.

2.  Patient’s diagnosis and how it relates to the service or equipment needed.

3.  Why the patient needs the service or equipment.

4. Patient’s overall therapeutic goals and how the service or equipment will help him meet those goals.

5.  A description of the product or service in as much detail as possible. This can come from the therapist or from the company that supplies a product. (You may be able to get this online).

6. The doctor or therapist’s phone number and email address, in case the insurance company has any questions.

Make a note of the date the letter was mailed. If you haven’t heard anything after 2-3 weeks, call the insurance company or funding agency and ask about the status of the claim. Make sure you write down the name of the person you talk to and get their permission to call them with any follow-up questions. Ask when a decision might be expected on payment.

If that date comes and goes, call again. Let them know you are tracking the request with dates and people’s names. But stay as pleasant as possible. You want their cooperation. If the agency or insurance company is unresponsive, get the doctor or therapist to help.

This good example of a letter of medical necessity is from Dr. Freeman Miller’s book Cerebral Palsy: A Complete Guide to Caregiving.

You can find more information about cerebral palsy and resources for parents and children with cerebral palsy at www.cpfamilynetwork.org.