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Cerebral Palsy

Making a Difference in the Lives of People Living with Cerebral Palsy: One Step at a Time

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Guest Contributor: Dan Chalcraft

This September the Cerebral Palsy Association of British Columbia will be hosting September for the third straight year- an annual health and wellness fundraising challenge to raise funds to improve the lives of people living with cerebral palsy.

The challenge is for a team of one to four people to register for September, complete 10,000 steps a day for 28 days in September, and collect pledges to raise money for cerebral palsy. Walking isn’t the only activity that participants can do to achieve better health; swimming, yoga, running, strength training classes, dog walks, wheelchair basketball, and rugby have been activities that participants can do to help make a positive impact and difference in the lives of people living with cerebral palsy (CP). There are more than 40 activities you can convert to steps including activities suitable for people with a disability.

Each team will have seven virtual summits to climb during their fundraising journey. The number of steps it takes to reach the top of each summit is directly related to the height of the summit. Each participant will reach all seven summits and the top of their virtual mountain by the end of September if they reach their target steps per day.

Susanne Raab, Chair of the September Committee, who participated in the challenge for the first time last year along with three of her colleagues, commented that they were surprised through doing the activities how much fun they had and how motivated they became to complete their 10,000 steps every day. “We had to be creative and stretch our comfort zones,” she said. “Last year our team raised over $8,000 and we were thrilled to be recognized as the top fundraising organization in Canada. This year we look forward to working even harder to beat that record.”

CP is a physical disability that affects movement and posture. It refers to a group of disorders affecting a person’s ability to move. The neurological condition normally occurs before, during, or after birth for a number of reasons usually it is a lack of blood supply, which means oxygen doesn’t flow to the brain causing brain damage or causing the brain to not fully develop. The damage leads to, among other things, problems with muscle development, control and movement.

Every 11 hours a Canadian child is born with CP and every hour 30 infants are born with CP globally. Cerebral Palsy is the most common disability in childhood and every step you take in September will go towards supporting cerebral palsy associations across Canada.

Raab said, “reflecting back on the last fundraising challenge, I would have to say that one of the most rewarding aspects of participating in September is the conversations it started with family, friends and even strangers, who, once they understand more about what cerebral palsy is and how it affects people, were so generous and willing to contribute.”

Raab, who also practices as a lawyer at Pacific Medical Law, said, “we are all very connected to the lives and challenges of people living with cerebral palsy as many of our clients are children living with cerebral palsy. We see their daily struggles, but more importantly we see their strength and resilience in the face of these challenges. We also see the worry and concern in the faces of their parents, which is only overshadowed by their deep love for their child.”

She believes that it’s so rewarding to contribute to this fundraising effort. “We know that raising these funds is necessary to enable the Cerebral Palsy Association of BC to continue to support and provide services for people living with cerebral palsy, and we can see it makes a difference in the lives of people living with cerebral palsy.

Taewon Kook, a 28 year-old Port Moody resident, participated in the September challenge last year and was introduced to wheelchair rugby and basketball indicating that these are his favourite activities to participate in. “September has taught participants about perseverance by doing fundraising activities such as meeting potential donors and persuading them to contribute to the cause,” he said.

He decided to join the campaign due to the fact that he has CP and wants to make a difference. The Simon Fraser Sociology graduate plans to participate this year in the September challenge and would like to reach out to people to ask for offline donations.

People who would like to get involved or support the cause can find out more information online at http://September.ca/ or e-mail [email protected].

*image via cerebralpalsyguide.com

If at Birth you Don’t Succeed…

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Zach Anner was born 2 months early, weighing in at 3 pounds and 7 ounces, and was diagnosed with cerebral palsy. He explains, “There is no denying it – I was a crappy baby who failed my way into this world, and I’ve been making the best of it ever since.”

And so he has. As a young adult, Zach has amassed considerable fame in his life. He has had his own travel show on the Oprah Winfrey Network called Rollin’ with Zach, and has hosted a show called Have a Little Faith for Rainn Wilson’s media company SoulPancake. He also has his own popular shows on his own YouTube Channel called Riding Shotgun and Workout Wednesdays, which has over 10 millions hits.

In his recent memoir, “If at Birth you Don’t Succeed”, Zach recounts the peaks and valleys of his life living with cerebral palsy. A gifted storyteller, Zach takes his readers on a journey with him through a life of adventures, triumph and failure to friendship, love and loss. He does so with an honesty that will make your heart ache and a sense of humour that will make you fall out of your chair with laughter. Along the way he shares pearls of wisdom such as this,

What I’ve learned from taking a bird’s-eye view of my life so far is that the good fortune I’ve had has come from seizing not just my moments but my mistakes. I might not be able to tie my own shoelaces, but if there’s one skill I’ve perfected, it’s the art of finding the humor and the purpose in every failure. I’ve accepted that we’ve all got crap to deal with and problems that we’re fighting not to be defined by. At the end of the day, we all want the same stuff: fulfillment, love, support, comfort, and a hot-air balloon with laser guns attached to it. The most important thing is that we appreciate the crazy ride we’re on.

Simply put, Zach is brilliant – his perseverance, optimism and sharp wit pierce through the often dim shadows cast on the lives of people living with disabilities, and serve to enlighten and uplift us all.

Heartfelt, hilarious and inspiring, this book is a must read.

Kernicterus – Why all Babies should be screened for Jaundice

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At least half of babies develop jaundice in the first few days of their lives, and usually it is not a problem. However, in rare cases, if left undiagnosed and/or untreated, jaundice can lead to a condition called kernicterus (toxic deposits of bilirubin in the baby’s brain) that causes severe brain damage and life-long devastating disability. In all cases, this type of brain injury can be prevented by a simple, minimally-invasive and painless test and subsequent prompt treatment. Provinces, like British Columbia, that do not universally administer this test for hyperbilirubinemia should follow the example set by provinces that do, like Alberta, in order to practically eliminate the incidence of kernicterus and the resulting life-long disabilities in previously healthy babies.

What is Jaundice and when is it Dangerous?

Jaundice is a term used to describe the yellow color of the skin and whites of the eyes that happens when there is too much bilirubin produced in a baby’s body. Bilirubin is an orange-yellow pigment that is produced by the liver as a result of the breakdown of red blood cells. Babies’ levels of bilirubin are higher than those of adults for several reasons: 1) babies make more bilirubin because they have more red blood cells; 2) babies’ livers are still developing and they cannot remove as much bilirubin from the blood as adults’ livers; 3) because new babies do not yet stool (poo) within the first few hours of life, they reabsorb some bilirubin that in adults would be normally excreted through stool. All of these three causes are physiological, meaning they are “organic” to your baby’s maturation and adjustment to life outside the womb. Rarely, these causes result in extremely high levels of hyperbilirubinemia that can harm your baby.

In some cases, in addition to the above factors, babies can develop “pathological” jaundice as a result of blood group incompatibility (Rh or ABO). Sometimes, fetal red blood cells cross the placenta during pregnancy causing the mother’s blood cells to develop antibodies. When the antibodies cross over into fetal circulation, they attack the baby’s red blood cells and cause jaundice. The risk of this happening is highest during or at the time of birth. Hyperbilirubinemia occurs as a result of continuous hemolysis and failure of the newborn liver to handle the bilirubin load. This type of jaundice can develop on the first day of life and is more likely to develop into severe hyperbilirubinemia and cause a brain injury if left untreated.

What is Kernicterus?

Kernicterus refers to the yellow staining of the neurons and neuronal necrosis of the basal ganglia and brainstem nuclei (the structures within a brain) due to bilirubin crossing the blood barrier and depositing into these brain structures. It results in permanent and severe brain injury characterized by athetoid cerebral palsy with or without seizures, hearing deficits, developmental delay and cognitive impairments. Unlike many other causes of cerebral palsy, kernicterus is almost always preventable with proper testing and treatment.

What is the Test?

Transcutaneous bilirubin test is a simple minimally invasive and painless test that involves a health care provider placing a bilimeter (an instrument to measure the bilirubin levels) on a baby’s chest and reading the meter results. These results are then used (quire reliably) to predict the levels of bilirubin in the blood. If further testing is required, a simple blood test will measure the precise levels of bilirubin in your baby’s blood.

My Baby is not Visibly Jaundiced – Is the Test Still Necessary?

Visual assessment of jaundice is not a reliable method to either evaluate the levels of bilirubin in a baby’s blood or to predict hyperbilirubinemia.

What is the Treatment?

If your baby’s bilirubin levels are high, he or she will undergo phototherapy which helps with the breakdown of bilirubin. In rare cases, your baby may require a blood transfusion.

How can Kernicterus be prevented?

Kernicterus is almost always preventable. The Canadian Pediatric Society (“CPS”) recommends routine and universal testing for all infants regardless of whether they are visibly jaundiced, or not, in the first 72 hours of life, or at discharge from the hospital. In addition, the CPS recommends that any infant discharged before 24 hours of life be reviewed within 24 hours by someone with experience in the care of the newborn and access to testing and treatment facilities. Finally, the CPS recommends that any infant who is visibly jaundiced in the first 24 hours of life have their bilirubin levels assessed, because any neonatal jaundice that develops in the first 24 hours is usually pathological. If these CPS recommendations of universal testing are adopted by all health authorities across the country, cases of kernicterus can be virtually eliminated.

Was your Child’s Cerebral Palsy Preventable? Unanswered Questions

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We are often asked by parents of children with cerebral palsy whether or not their child’s cerebral palsy may have been preventable with appropriate medical care. This is a question rarely addressed by the child’s treating physicians. Answering this question involves bringing together the medical opinions of a variety of carefully selected medical specialists who must each contribute their opinion on discrete areas of the medical care provided or the injury suffered by the child. Since this does not impact upon the medical treatment being provided to the child, this typically does not occur in the clinical setting. One exception is when the hospital performs a Quality Assurance Review in response to potential concerns about the quality of the medical care provided to a pregnant mother and/or her child; however, the results of these investigations are kept confidential and are not disclosed to the parents of the child with cerebral palsy.

This leaves many parents with unanswered questions. While they may receive fragments of information from various physicians, over the years an exhausted parent’s battle for answers quickly becomes displaced by the daily battle for resources such as therapy, support and equipment. The unanswered questions, however, continue to weigh on the parent’s mind, resurfacing from time to time, only to be buried again by weight of the day-to-day needs of their child.

We are frequently contacted by these parents – sometimes within weeks of their child’s birth, but often many years later. Parents always ask the same question: “Could my child’s injury have been prevented?”

It is understood that cerebral palsy can occur as a result of various medical conditions that are well-known and preventable with appropriate medical care. Some examples we are familiar with are as follows:

During Pregnancy :

  • Failure to diagnose and treat illness in the mother such as high blood pressure;
  • Failure to diagnose and treat symptoms such as maternal bleeding;
  • Failure to properly monitor the growth and development of the fetus; and
  • Failure to fully inform the mother of the risks associated with a VBAC (vaginal birth after caesarian section) delivery.

During Labour and Delivery :

  • Failure to properly monitor the fetal heart rate, and respond appropriately to signs of potential fetal distress;
  • Failure to properly administer oxytocin;
  • Failure to intervene to expedite the delivery of the baby when progress has slowed or stopped;
  • Failure to anticipate and properly manage shoulder dystocia; and
  • Failure to perform a caesarian section in a timely manner to avoid brain injury to the baby.

After Birth :

  • Failure to diagnose and properly treat certain conditions in the baby including hypoglycemia, jaundice and infection; and
  • Failure to properly administer medication, nutrition and/or fluid.

In these circumstances, if we are able to prove that a child’s cerebral palsy was preventable with appropriate medical care, the child is entitled to receive a significant financial settlement to allow the parents to provide for their child’s care, support and therapy, to help their child reach their full potential in life.

It is also understood that cerebral palsy can occur for reasons that are not (yet) understood by modern medicine and in circumstances in which it was not preventable. In these cases, knowing the child’s injury was nobody’s fault, can help relieve any anger or guilt parents may be feeling, and help them to put the circumstances of their child’s birth behind them, and to focus on their child’s future.

Either way, parents often feel it is better to know, rather than to continue to wonder.

If you are a parent of a child with cerebral palsy and have unanswered questions, please feel free to contact us. We will carefully review your concerns with you, conduct a detailed review of the medical records and consult with our experts (depending on the circumstances of each individual case), in order to answer your questions and determine if your child may be entitled to financial compensation.

We will review your case and answer your questions without charging you any fees for our investigation.

You may contact us at 604-685-2361 or toll free at 604-685-2361, or you may visit our website at www.pacificmedicallaw.ca

Bursary for Children Living with Cerebral Palsy

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Pacific Medical Law has established a bursary fund in honor of Janna Epp, a beautiful, determined young girl with cerebral palsy, who faced challenges that few of us could imagine. Sadly, on October 11, 2012 Janna passed away.

In memory of Janna, Pacific Medical Law will donate $5,000 to a child living with cerebral palsy every year, to assist with that child’s care, therapy or recreation. The recipient of the bursary is selected by Janna’s mother.

Last year Pacific Medical Law provided the $5,000 bursary to a little girl named Leila. Leila is an extraordinary child with cerebral palsy who is amazingly strong and has a true zest for life. Leila works hard with her therapies and wanted the opportunity to try Feldenkrais therapy and therapeutic horseback riding to improve her muscle tone and decrease stiffness. She also wanted a Squiggles postural support system to keep her safe and comfortable when she is out exploring the world. Pacific Medical Law was pleased to support Leila and her mother, in this small way, to help Leila reach her full potential in life.

This year the bursary recipient will be selected on July 30, 2015. Applications are due July 15, 2015. For more information, please click; Janna Epp Bursary Application Form 2015, or go to https://www.pacificmedicallaw.ca/jannaeppbursary.shtml

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