St. Louis Doctor with Cerebral Palsy Offers Hope

ST. LOUIS - Dr. Jan Brunstrom-Hernandez gently but sternly admonishes a teenage cerebral palsy patient who clearly hasn’t been doing his exercises, stressing the importance of keeping muscles loose and limber.

“We know it’s not fair, but that’s the way it is,” Brunstrom-Hernandez tells 15-year-old patient Sam Ward. “Do you hear me? I know what I’m talking about.”

Brunstrom-Hernandez, who founded the Cerebral Palsy Center at St. Louis Children’s Hospital 15 years ago, has cerebral palsy, giving her a special empathy for the people she treats.

Cerebral palsy is a broad diagnostic term referring to disorders that affect movement and posture. It is caused by injury or abnormal development of the brain, usually before birth. Many patients suffer from other afflictions, too, such as speech or hearing difficulties. Symptoms vary greatly.

Brunstrom-Hernandez, 50, was surrounded by doctors from a young age as she coped with the disorder. She figures that’s a big reason she knew as a small girl she wanted to be a doctor. Still, she initially balked at specializing in treating others with cerebral palsy.

“I didn’t want to be surrounded by more of me,” she said. “I didn’t feel good about myself because of my disability.”

A chat in 1997 with Dr. Mike Noetzel at St. Louis Children’s Hospital changed all that. At the time, Brunstrom-Hernandez was doing research on cerebral palsy and was surprised to learn treatment hadn’t progressed much beyond the treatment she received in the 1960s. He suggested she launch a cerebral palsy clinic.

“All I said was, ‘You’ve got some good ideas. I think people would listen to you. Let’s at least try to start something,’” he recalled.

The clinic opened in May 1998.

Many clinics in the U.S. treat cerebral palsy among many other neurological disorders, but the St. Louis center is unique in its singular focus, said Kaelan Richards of United Cerebral Palsy.

Brunstrom-Hernandez and her team of doctors and therapists see patients of all ages — babies to adults — from across the world. The center has treated about 2,000 people since opening 15 years ago.

Sam, at the clinic recently with his parents, is in many ways a typical teen. He wore a T-shirt, shorts and sported a sly grin as Brunstrom-Hernandez examined him — even through her motherly admonitions.

“She helps me walk better,” he said. “Just be better.”

Anna Marie Champion of Atlanta has been bringing her daughter, Morgan, on the 11-hour trip to the St. Louis clinic for 10 years, since Morgan was 3. Morgan uses a walker but is scholarly and motivated, a seventh-grader who already has earned a college scholarship.

“We went to St. Louis, and it was a whole different approach,” Champion said. “It has turned her life around completely.”

Brunstrom-Hernandez stresses the need for exercise and communication. From childhood, movement was difficult for her.

“If the wind was blowing hard enough, I’d fall down,” Brunstrom-Hernandez recalled.

Her mother made her keep moving, even requiring her to stand in the kitchen to do dishes when it was the last thing the little girl wanted to do.

“She insisted that I not be dependent,” Brunstrom-Hernandez said. “She insisted that I pull my weight. It’s a good thing. It made me tough, and it made me strong.”

Strong, yes, but Brunstrom-Hernandez acknowledged she sometimes felt embarrassed by cerebral palsy. She recalled how she would recoil if she caught a glimpse of mirrored glass showing her struggling to walk.

It wasn’t until she started the clinic that she embraced who she was and what she could do to help others.

“I have gotten as much or more out of taking care of these patients as they have ever gotten from me,” she said. “It changed my life. They saved my life. They taught me how to believe in myself. They taught me how to look at myself differently.”

Moving around the clinic, only Brunstrom-Hernandez’s gait shows any effects of her cerebral palsy, though rheumatoid arthritis causes her pain. She acknowledges it can be physically exhausting.

“I have to work all the time to stay on my feet,” she said.

It’s a dedication that doesn’t go unnoticed by her colleagues.

“I think the empathy does come through,” Noetzel said. “Her line is kind of a tough one: If you really want to do best, this is what you need to do. I think there’s a much greater acceptance coming from her.”

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How to Take Time for Yourself

By Denise D. Aggen

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Respite care. How many parents really take advantage of this short-term break from caring for a family member with cerebral palsy? As a single mother, I was offered this many times, but never took advantage of it. My main concern was who would stay with my daughter with CP and could I trust them. My family is not able to help me with my daughter, so I have to depend on outside care for help.

With the demands of the world, you find that your plate gets too full and your shoulders begin to ache from all of the stress. Taking one evening, one day, or one weekend can help with that stress. I try to take one weekend every couple of months and do something for myself. I have a caregiver that stays with my daughter at my house for the weekend, and I plan time away.

Recently, I have found a little remote lodge and retreat in a country side location in Idaho about two hours away from my home. I rented a cabin with my own screened in porch and personal hot tub. This was located directly next to a creek in a beautiful area full of trees and peacefulness. Now you do not have to go to the extreme of traveling far away or going to an expensive retreat. Maybe plan a weekend with a friend and go sightseeing, or stay in a nice hotel suite and catch a movie. Anything that you can do that does not require you to have any responsibilities of taking care of anyone else but yourself is the whole point of respite care.

Once when I took one of my weekends away, I signed up for a watercolor painting class in a mountain location. The drive there was beautiful and the fresh mountain air was relaxing. I came back home relaxed and excited about learning something new. Finding a craft or a hobby can help with decreasing any stress that one may feel. Finding that one thing that you truly enjoy will help put a smile on your face and take the stress out of your body.

What makes you happy? What are some of the things that you like to do that help you to relax? Are there any hobbies or crafts that you have always wanted to try, but have just never found the time to do? Take that respite care time and relax. Taking care of yourself is important, because you want to be able to be healthy so you can be around to take care of your special someone with cerebral palsy. Be happy. Make it fun.

About the Author

Denise D. Aggen is a single mother of two daughters who are 23 and 16. Her oldest daughter has cerebral palsy. She is a blogger and writer and is currently working on her Bachelor of Science degree in Psychology. She keeps a blog about raising a child with disabilities and a personal blog about “random things.”

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Was My Daughter’s Cerebral Palsy Preventable?

By Ellen Robertson

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Every parent of a child born with a brain injury asks themselves, “Was my child’s birth injury preventable?” Very few find the answer to that question. Why? Many times, they’re convinced by the physicians and other medical personnel involved in their child’s delivery that “these things happen.” How many parents actually take the steps to investigate their child’s birth in spite of assurances that their child’s birth injury was “unavoidable?”

Taking on Goliath

I remember having a conversation with a family member several months after our daughter was born. My daughter suffered a severe neurological injury at birth due to “complications of unknown origins.” During this conversation with my cousin, he suggested that I should have my daughter’s birth investigated. He also suggested that if investigators found that my daughter’s injuries were “preventable,” that I should sue for damages. I reminded him that he was suggesting I take on Goliath! I would not be suing a small, home town hospital. I would be suing one of the largest entities in the free world! I laughed at his suggestion and asked him if he knew any really, really good lawyers who would take such a case! I dismissed his suggestion and our conversation.

Making the Call

Fast forward almost 3 years. While watching television one afternoon, a commercial came on.  It was a malpractice law firm with an advertisement about cerebral palsy and birth injuries. I don’t know why, but I tuned in to that commercial, as voices from the past filtered through my mind. The conversation I had with the Attending Pediatrician the morning after my daughter’s birth was as clear in my mind at that moment as it had been that morning 3 years previous. The words “this was preventable” echoed through my mind. He had explained to me that, had the staff used a fetal heart monitor during my daughter’s delivery, they would’ve seen her distress and been able to physically stop the vaginal delivery and perform an emergency C-section, possibly preventing the severe birth injury she sustained.

As I copied down the 800 number, the doubts and inhibitions crept in. I remembered the conversation I had with my cousin and the disturbing reality of what I was contemplating started to set in. Did I really want to take on this fight? Would a lawyer even take our case? I didn’t know. I knew one thing though, we had nothing to lose! My daughter was severely brain injured and I wanted answers! It was already becoming evident, as early as 6 months of age, that my daughter’s brain injury was going to have a profound negative impact on her life. I wanted to know exactly what happened during those 40+ minutes that robbed my daughter of a normal life. I made that call.

Getting Answers

I had no knowledge of “statute of limitation” laws, but learned in my discussions with the lawyer that we were just 3 months away from the statute of limitations expiring. The resulting investigation by our lawyer provided the answers I needed. It was found that my daughter’s birth injury was the result of gross negligence on the part of the medical staff involved in her delivery. The negligence was such that our lawyer told us he was prepared to take our case to the Supreme Court if we had not won. As it turned out, we did win the case, and the ensuing settlement helped to provide a level of care and quality of life for our daughter that would not have been possible otherwise.

If your child was recently diagnosed with a neurological injury that you suspect occurred during their birth and you don’t have the answers you seek, MAKE THAT CALL. It may make the difference between you having to fight for services for your child their entire life, or being able to provide all the services and interventions they may need without government restraints or restrictions.

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Cerebral Palsy Diagnosis

Many parents of children diagnosed with cerebral palsy are given little explanation of the cause, severity or future implications of the disorder. Surprisingly, many children may not receive a cerebral palsy diagnosis until they are school age, even though there may have been circumstances at birth that indicated risk of cerebral palsy. Many pediatricians take a “wait and see” attitude when parents present issues of delayed development.

Most cerebral palsy conditions are caused by lesions on the brain. These lesions may be caused by:

• Injuries that occurred during pregnancy or birth (congenital cerebral palsy)
• Injuries sustained in the months or years following birth (acquired cerebral palsy)

While symptoms range from mild to severe, the condition does not get worse as your child gets older. Depending on the level of severity however, a child may be at risk for complications related to cerebral palsy such as developmental delays, failure to thrive, joint contractures, scoliosis or seizures.

Cerebral Palsy Diagnosis

Spastic Cerebral Palsy

Known as the most common form of cerebral palsy, spastic cerebral palsy causes tightness in the muscles. Patients have stiff and jerky movements and will often have difficulty letting go of something in their hand. Many children with spastic cerebral palsy rely on medications, therapies or surgical interventions to manage their spasticity and prevent secondary complications.

Athetoid Cerebral Palsy

Athetoid cerebral palsy (fluctuating tone) is a neurological disorder resulting in a variety of movement disorders that result in involuntary and uncontrolled movements. A child may be shaky and unsteady and may make frequent, abrupt movements. Due to the mixed muscle tone involved in athetoid cerebral palsy, a child may experience difficulty with fine motor skills and maintaining torso control.

Ataxic Cerebral Palsy

A less common form of cerebral palsy is ataxic cerebral palsy. Ataxic CP disturbs a child’s sense of balance and depth perception, resulting in jerky, uncoordinated movements. A child with ataxic cerebral palsy may exhibit mixed tone and experience challenges with controlled movements.

Healthcare Concerns

Depending on the level of severity, cerebral palsy may result in a variety of healthcare concerns including inadequate oral motor skills and compromised ability to consume adequate fluids and nutrients. Untreated, severe oral motor dysfunction can result in dehydration and failure to thrive. Other healthcare concerns may include childhood osteoporosis, movement disorders, gastro- esophageal reflux disease (GERD), contractures of the extremities, and scoliosis.

Neuromuscular Issues

These affect the nerves that control voluntary muscles. “Neuro” indicates the origin of the disorder is at a neurological (brain) level. Left untreated, neuromuscular issues can severely impact a child’s quality of life and future development.

Seizures

Not all children with cerebral palsy suffer from seizures, just as not all children who experience seizures have cerebral palsy. Seizures result from abnormal and excessive discharges of nerve impulses originating from certain brain cells. Some of this excessive activity reaches the skeletal muscle fibers and triggers the violent contractions typical of many seizures. Seizures differ depending on the portion of the brain involved. Seizures that occur in only one hemisphere or part of the brain are known as “focal seizures.” Seizures that occur in both hemispheres are referred to as “generalized seizures.”

Range of Motion Issues

Range of motion (ROM) is the measurement used to describe the degree of flexion (how far it can bend) and extension (how far it can stretch or extend) in a joint. ROM is usually measured by degrees. Many children, especially those with spastic cerebral palsy, experience limited range of motion. Children with hemiplegia may experience limited range of motion involving the extremities on one side of their body. Children with quadrapalegia may experience range of motion issues with all extremities including the trunk, putting them at risk for spinal scoliosis.

Early Intervention

Receiving a cerebral palsy diagnosis allows parents to move forward and begin to pursue treatment and therapy options for their child. Early intervention is key to providing children with cerebral palsy the highest quality of life possible. For information about managing your child’s cerebral palsy, visit our Cerebral Palsy Treatments and Therapies page.

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

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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Understanding and Treating Epilepsy

By John Lehman

Some children who suffer from cerebral palsy have a chance of developing epilepsy, a seizure disorder brought on by brain injuries or certain neurological disorders. In fact, children and adults with cerebral palsy have a significantly higher chance of developing epilepsy than those not suffering from the disorder. Although there is still much to learn about epilepsy even today, there have been many advances in diagnosing and treating the condition.

Definition

Epilepsy is usually identified after the victim has received more than two randomly occurring seizures. When a person suffers from a seizure, the brain receives an overload of electronic signals powerful enough to disrupt normal brain functionality. This typically results in unconsciousness, involuntary muscle movements or spasms, emotional outbursts and loss of memory, though it varies depending on the person and the severity of the seizure.

Diagnosis

If you are concerned about your child having seizures, or your child has experienced his or her first seizure, set up an appointment with your doctor immediately. When children with cerebral palsy are experiencing seizures, a doctor can perform an EEG exam to assess their condition. Using a recording device, your doctor will scan your child’s brainwaves for abnormalities. Once the scan is complete, the data will be sent to a neurologist for analysis.

Types of Seizures

For those suffering from cerebral palsy, seizures associated with epilepsy are often categorized into two distinct types. Symptomatic seizures are identified as such when there is a specific, identifiable cause such as a disease or abnormality in the brain. Cryptogenic seizures, on the other hand, have no directly identifiable cause. These seizures are also known as idiopathic seizures. In these cases, doctors tend to look into the patient’s family medical history to see if the seizures are genetic.

Treating Seizures and Epilepsy

Once a seizure has begun, there is no way to stop it. Instead, the best thing you can do to help is to ensure your child is safe and comfortable. Clear the environment of potential hazards that could physically harm your child, as their uncontrolled movements could lead to cuts and bruises. Provide them with a pillow or a blanket so they may rest comfortably once the episode has passed. Contrary to popular belief, never attempt to stick anything in your child’s mouth when they are suffering from a seizure, as this could lead to serious injury (including choking or damage to teeth).

A single seizure is indeed a cause for alarm, but it may not be indicative of a seizure disorder. Remember that a doctor will likely not diagnose the condition as epilepsy if this is your child’s first seizure. In the case of a second or even third seizure, your child’s doctor will consider different forms of treatment, such as antiepileptic medications. If these do not prove effective, the doctor may recommend surgery.

There are other methods available to reduce the likelihood of a seizure occurring, including maintaining a healthy diet, keeping a balanced sleep schedule and exercising regularly. Your child’s doctor should be able to advise on which treatment is the best fit for your child’s condition.

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Hyperbaric Oxygen Therapy: Does it Work for Children with Cerebral Palsy?

Hyperbaric Oxygen Therapy: Does it Work?

By John Lehman
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Hyperbaric Oxygen Therapy (HBOT) is commonly used to treat scuba divers with the bends, but recently, the therapy has been used to treat certain types of cerebral palsy, as well. Opinions vary as to whether or not HBOT is an effective treatment for children with cerebral palsy. Some research has shown improvements in motor, verbal and visual skills. However, others feel there isn’t enough conclusive data to recommend it to people with cerebral palsy. We’ll review both sides of the argument to help you decide if HBOT is the right treatment for your child.

What is Hyperbaric Oxygen Therapy?

When using HBOT, the patient enters a specialized room or a glass chamber designed for manipulating air pressure. The procedure is painless and patients can wear comfortable clothes, listen to the radio, read or watch television while inside the room. The average session lasts roughly an hour, including decompression once the session has finished.
Once the patient is inside, the room is sealed and the air pressure within is raised to a point where the patient is breathing 100 percent oxygen. In comparison, the air you are breathing right now contains approximately 20 percent oxygen. Increasing the air pressure in this way allows for the lungs to take in three times as much oxygen as they normally would. With more oxygen intake within the body, damaged or disabled cells can be regenerated and potentially given a second chance to become functional again.

Are There Any Risks?

As with any medical procedure, risks do exist when using HBOT. Patients undergoing HBOT may experience barotrauma, a form of ear damage related to changes in pressure. The medical practitioner on site should be able to advise you on how to reduce health issues related to compression and decompression, which should prevent this from occurring. Other issues associated with HBOT include oxygen toxicity, headaches or fatigue. Thankfully, these risks are not very common.

Does it Really Work?

HBOT is a controversial treatment for those with cerebral palsy. Within the last decade, many studies have been conducted and results have varied. In 1999, a study was published by researchers at McGill University to test the effectiveness of HBOT in children with cerebral palsy. The study took 25 children with cerebral palsy, who each underwent 20 sessions of HBOT over a month-long period. Follow-up tests concluded that 67 percent of the children showed improvement in movement and a reduction in muscle spasticity.
However, a study from Canada in the late 1980’s was met with skepticism. The study gathered 473 children afflicted with spastic cerebral palsy and administered 20 one-hour sessions of the therapy to 230 children within the group. Upon reevaluation after six months, roughly 75% of the treated children had improved balance and a lowered frequency of convulsions.
The controversy stems from the remaining 243 children who were grouped into a placebo study. Unlike standard placebo studies, these 243 children were treated with a reduced version of HBOT, using 1.3 atmospheres of pressure as opposed to the 1.7 atmospheres of pressure used for the original 230. This has led some researchers to claim that the study did not use a true placebo. An article written by Pierre Marois provides further details regarding this controversy.
Even today, research is ongoing in regards to the effectiveness of HBOT for cerebral palsy. While more studies are published demonstrating improvement in the quality of life for those treated, others point out that the treatment does not cure cerebral palsy and that the effects of HBOT are not permanent. HBOT can also be a costly procedure and, therefore, may not be available for all families whose children have cerebral palsy. In any case, it’s best to speak to your child’s doctor about HBOT to see if the treatment is worth trying for your child.

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The Truth About Dane: A Cerebral Palsy Story

The Truth About Dane

By Julie Ufema
My son Dane has Cerebral Palsy. It’s not a bad word. No, not necessarily a good word either. Before I had Dane the most I knew about CP was that Blair’s cousin Geri had it on “The Facts of Life.” Not a lot to go on, admittedly.
At 24 weeks I started going into labor twice a day, every day around 10:00 am and 2:00 pm. I was put on strict bed rest and after being hospitalized, life-flighted and completely scared out of my wits, Dane insisted on being born 11-1/2 weeks early. There was no stopping Dane then, just as there is no stopping him now.
He was strangely perfect at over 3-1/2 lbs. and 17 inches long. His Apgar scores were an 8! (That’s equal to a silver medal at the newborn Olympics.) They called him ‘the boring baby’ in the NICU, quite a compliment with what they see on a regular basis. There was good news all around – until that day.

Receiving a Diagnosis

They HAD to do a cat scan of Dane’s brain because he was a ’29 weeker’. It’s simply mandatory. No one expected to find what they found. Dane had two types of brain damage. The first occurred before birth and the second occurred afterwards, not unusual for such a premature baby.
We learned that the scale of brain damage severity ranges from 1 to 4, 4 being the worst-case scenario. After much deliberation the general consensus was that both of Dane’s ‘gray spots’ were about a 3.
Speculation flew. Dane would never talk. He wouldn’t eat or swallow on his own. No one really committed to the mobility issue. I appreciated that the doctors didn’t claim to be God, able to predict our future. But then there were moments I wished that someone would, just so I could process the news and move on with our lives.

Finding Help

We got help, immediately. He had an aide, teacher, occupational, physical and speech therapist come to the house weekly. I had no fear of the ‘never speaking’ issue when Dane was chatting up a storm at 10 months old. He began screaming bloody murder almost immediately. Dane’s all-time, record-breaking temper tantrum topped out at an eardrum destroying, seven-hour stretch. He had moxy. That was for sure!
Fast-forward five years and Dane is beyond a miracle. He is healthy as a horse. No glasses or hearing aids necessary. He has entered mainstream kindergarten with no educational plan for a developmental delay. Dane simply can’t walk or use his hands effectively. He can’t write, sit up unassisted or feed himself beyond finger foods. But his mind, his sense of humor, the indescribable gleam in his eye is all truly infectious.

Experimenting with Treatments

All that love him want him to live to the fullest so we opted to have two surgeries to help him do just that. I promised Dane that I would always be his voice when he couldn’t speak for himself. I truly believed he would want to take risks to reap the rewards. Now I find myself questioning just how far we should go.
The first surgery was a complete success. He had a spinal dorsal rhizotomy. I describe it as an incredibly sophisticated game of ‘Operation’ where they open your spine and test the nerves for over or under stimulation. If acting abnormally, the nerves get cut. After a tough recovery, Dane responded extremely well to this surgery.
Dane then underwent an Intrathecal Baclofen Treatment. The surgeon inserted a hockey puck-sized pump in Dane’s belly, hooked up to a tube that wraps around his side and then feeds into his spine. The oral muscle relaxers he once took that unnecessarily affected his brain could now be sent directly to the parts of his body that needed them most and at a much higher dosage. The benefits were immediately noticeable.
Dane could isolate his pointer finger as opposed to ‘raking’ his food with many fingers. He properly held a crayon instead of fisting. He could reach above and behind his head. His speech seemed to improve. His arms and hands comfortably laid at rest when not in use. Small things that most people would never notice, never go unnoticed around here.

Questioning Our Decisions

BUT, the incision wouldn’t heal. It burst open three weeks after the first surgery in the car on the way home from vacation.  A one in a million side effect and there it was, right in front of my eyes.
At the hospital they laid Dane out, gave him a local, proceeded to clean out the original incision and then stitched him back up, all the time hoping that that would be the last of it. I held my screaming baby boy’s hands and promised him that this would be the end of it. This was as bad as it would get. I didn’t know that I was wrong. I clearly didn’t know that I was right but I was desperate to make him feel better.
Two weeks later we found ourselves back in the hospital with another burst incision. Again, they cleaned him up, and without stitches, sent us home for a few days. Four days later, the bubble had grown back again. This time I heard the word I had been dreading, ‘surgery’.
Soon we will go in, for what I hope is the last time on this issue. The doctor wants to try and save the pump – cut away the stretched skin and re-close. My motherly instincts tell me to scream, “Just take it out! For the love of all things good and holy, just take it out!”
But what would I say if I was Dane? I would want every chance possible. We can try again when Dane is bigger and stronger but that will require another surgery. I’ve never waited for anything in my life and the kindred spirit I’ve found in my beautiful, willful, stubborn son stares straight into my eyes and trusts his momma to do what’s right.
Life, for me, was always about being right, but after meeting my children I learned that life is really about doing what’s right.  With this next step I just hope we all do right by Dane.

About the Author

Julie Ufema lives in Central PA with her husband, Jason, in-laws and two sons. After deciding to start a family, Julie and Jason found themselves plagued with fertility problems. They had just about given up when their first son, Jett, was conceived. Julie and Jason were quickly blessed with a second son, Dane. Within days of Dane’s birth they received the shocking news that Dane had cerebral palsy and Jett was diagnosed with autism. Julie has written a narrative memoir chronicling the ups and downs of raising two children with special needs and continues to write and make films as time allows.

Pediatric Stroke & Cerebral Palsy

Most people think strokes affect only adults, but they can also occur in children, even before birth. In fact, pediatric stroke is one of the leading causes of death in children. Children who have suffered from a pediatric stroke also have a high chance of developing cerebral palsy. Learn more about pediatric stroke in our latest blog.

http://www.cpfamilynetwork.org/blogs/pediatric-stroke-and-cerebral-palsy

Advice to Expecting Parents about Assisted Delivery Using Vacuum Extraction

When a mother is unable to deliver a child on her own, assistive equipment may be used to help speed the birthing process. Because the need for vacuum extraction (VE) is always a possibility during childbirth, parents need to be aware of what it entails and what questions to ask of their doctor.

http://www.cpfamilynetwork.org/blogs/advice-to-expecting-parents-about-assisted-delivery-using-vacuum-extraction?utm_campaign=CPFN+Eblast+-+Dec+26.+2012&utm_medium=email&utm_source=newsletter&utm_content=Vacuum-Assisted+Delivery

Brother Shares Special Bond With Twin Who Has Cerebral Palsy

Here is a beautiful story of twin brothers who share a deep bond, even though one of them is severely handicapped. Read all about this heartwarming story in our latest "In the News" article.

http://www.cpfamilynetwork.org/in-the-news/brother-shares-special-bond-with-twin-who-has-cerebral-palsy

Student’s Work May Help Diagnose Cerebral Palsy Earlier

Do you wish hospitals were able to diagnosis cerebral palsy earlier? Can you imagine being able to start treatment within days rather than months or years? A student at Virginia Tech is working on being able to do just that.

http://www.cpfamilynetwork.org/in-the-news/students-work-may-help-diagnose-cerebral-palsy-earlier

Heartwarming Video of Wrestler Who Lets Boy with Cerebral Palsy Win

Our latest "In the News" story showcases a young man who goes above and beyond the call of duty to make a classmate with cerebral palsy feel like a winner.

Do you all have similar stories of compassion for the disabled? Tell us about them in the comments.
http://www.cpfamilynetwork.org/in-the-news/heartwarming-video-of-wrestler-who-lets-boy-with-cerebral-palsy-win

Cerebral Palsy Family Network Photo Contest Winner

Photo Contest Winner: Life with Halyn

By Jamie Strickland
View similar blogs.

This is Halyn Jean Strickland, of Roanoke Rapids, NC, and her daddy, enjoying a relaxing day at the beach. Our story begins on November 10, 2006. Halyn was born on this date at only 26 weeks gestation. She remained in the NICU from that day until February 8, 2007. She had a grade 3 IVH at birth, and she also has hydrocephalus. At 1 yr. old, she had a VP shunt inserted in her head to drain any excess cerebral spinal fluid from her head, into her abdominal cavity. She was diagnosed with spastic CP at 2 yrs. old. The CP affects her lower extremities for the most part, and slightly affects her right arm/hand as well.

From the day she came home from the hospital until her third birthday, she was fortunate to receive help from an Early Intervention Program in our area. This group helped with finding Halyn great physical, occupational, vision, and speech therapy programs. Since turning 3, she has enrolled in a special needs pre-k and kindergarten, where she continues to receive physical and vision therapy at her school.
We also incorporate physical therapy at home into her playtime. She enjoys when we lay on our backs and pretend to be in a bicycle race. This helps strengthen her legs and stretches her hamstrings. I also do my own version of hippo-therapy, by getting down on all fours and having Halyn straddle and sit on my back as I go back and forth across our living room imitating a horse. Since Halyn’s CP affects mainly her legs, her grandfather came up with an idea where the two of us would hold a broomstick in our hand and have Halyn hold on in the middle of the broomstick and carefully walk along with us. This allows Halyn to try to walk with her hands held midway of her body, rather than having her arms up in the air by holding our hands. Believe it or not, this actually does seem to help and it helps our backs too, being that we don’t have to lean over and walk along with her as she holds our hands.

Another thing that we have recently discussed was Botox treatments. We have had a consultation, but the doctor didn’t want to go forward with them at the moment and has put her on a medicine called Baclofen. She has been taking it for about 6 months now, and in my opinion, it hasn’t really helped a lot, and I am searching for another doctor that would recommend the Botox.
In addition, Halyn has a gait trainer and a wheelchair. She also wear AFO’s (leg braces), and soft knee braces, called snoopies, that keep her legs straightened out during sleep. I have also sought out others that are going through the same thing for ideas that can help improve the quality of her life, like the Cerebral Palsy Family Network. I enjoy reading the posts from others and have become friends with many.

Hitesh’s Story: Turning Childhood Challenges into Motivation

Editor’s Note: Hitesh developed cerebral palsy after medical errors led to birth injuries. However, he hasn’t let his diagnosis slow him down! He approaches every challenge head-on to prove to himself and those around him that he can do anything he puts his mind to! Here is his story, in his own words.

By Hitesh Ramchandani

My Birth

On 20th January 1992 at 0144 hours I arrived on the planet called “Earth”. My mother and father were waiting for my arrival excitedly. I was their first child and unfortunately, they were not aware that their excitement was going to be changed into their biggest nightmare. The doctor made some mistakes during the delivery and as a result, I was born with cerebral palsy. I was labeled as disabled. My parents were taken aback, stunned and did not know how to react. Best part was, my mom did not even know what “cerebral palsy” was.

My Parents

My parents were strong and positive people. They knew deep down that God had given them such a child for a reason. They always treated me as a normal person. My father and mother had this strong belief that I would recover, never did they give up on me. The two of them always encouraged and motivated me to give my best in what ever I did. Doctors and teachers recommended to them to put me in a special school but they fought against it and made life for me as normal as any other child. They did not let the doctors’ opinion become their belief. They showered me with love. They spent a lot of time and money on my treatment. Due to that, I reached such a high level that whenever I looked down, I could not even measure how many levels and obstacles I have climbed! I love my parents – it  is such a blessing to have them.  My mom is the greatest woman – she used to take hours each day to make me drink a bottle of milk because she had to take caution that I did not choke due to my weak lungs.

My Childhood

Due to my problem, I had a tough childhood. People always made fun of me, imitated me. Some kids even thought I was an alien. This was due to the fact that during that time, the problem was bad. I could not even stand straight. My walking was like a drunken man walking. I had to use support; otherwise, I would lose balance. My speech was like an alien’s and people could not comprehend what I was saying. My muscles were extremely tight and tensed, especially muscles on my left, and I could not co-ordinate them. When people used to discourage me and make fun of the way I am, as a kid I would go home and cry. I still remember when I was 5 – I went to the park and no kid wanted to play with me because they thought I had a virus and if they touched me, they would be infected too! It makes me laugh when I remember that but during that moment I was so upset that I could not stop crying.  I thought God hated me and He was taking revenge – I was filled with anger and grief. Despite all the negativities, in my heart I always knew I was the best and I lived with a positive attitude. I knew that if I let the world break me, I would be finished before even beginning the race of life.
The positive things in my childhood were I had made amazing friends like Rahul Prem and Shiv Tulsiani. They are both my best buddies till today! They always encouraged me and lifted me up whenever I fell. I am also very lucky to have fantastic cousins like Vicky Vaswani and Karan Ramchandani; they are both like my elder brothers, backing me up whenever I need them. The best thing in my childhood was Natasha Ramchandani – the sweet little angel who entered my family when I was four. My mother gave birth to her on 1st June 1996. The first time I learnt how to walk was when Natasha was two and I was six – she started walking and I was surprised.  If she could walk, then why couldn’t I? Thus, I used that as a challenge and finally, I started walking.

Haig Boys’ Primary School

I entered Haig Boys’ Primary School at the age of 7. Every child is excited about the 1st day of school, but for me, it was the other way round. I was afraid that others would make fun of me and judge me. I was worried if I could cope with the schoolwork or not. I did not know if anyone would be my friend.
My classroom was on the 3rd floor and everybody used the stairs up to class but due to my disability, the school gave me the privilege to use a wheel-chair and a pass to use the lift. I was tempted to use those privileges, but I knew if I took advantage of them, I would never improve and remain where I was. Eventually, I decided to ditch the wheelchair and the lift pass and started to make my way up the stairs, just like everyone else – I did not need any “special” treatments.  The first time when everyone saw me climb up the stairs, despite the difficulty I faced each step, I became the school’s little hero. My principal was honoured to have me in the school and he believed I could be a symbol of inspiration to all the students. Despite my limitations, I always tried my best in my studies too and received passing marks most of the time, with some ‘A’ grades even.
There were times I failed, but my parents taught me that every failure is just another step closer to success. Most people fear failure but the most important thing they fail to understand is that failure brings one closer to success. Instead of regretting and lamenting on your mistakes and failure, learn from them and move on in life.
For example, if you have a gun in your hand and a bottle across from you, and your task is to shoot the bottle down, you just need to follow the steps.  Step one: you get ready, Step 2: you aim, Step 3: fire. If you miss, you won’t be crying right? You must repeat the three steps again and again until you get the bottle down. In fact, failing will just show you how inaccurate your aim was and the actions you need to take to make your next aim more accurate. So why can’t we apply the same concept in life?

Learning to Ride My Bicycle

My classmates would go cycling at the beach and I would be left out because I could not ride a bicycle. Thus, it became my motive to learn how to ride a bicycle. An average kid takes about 1-2 weeks to learn how to ride a cycle. It took me 3 months because of my condition – 91 days to be exact.
I used to practice cycling under my condominium everyday after school. Each day, I would come home with bruises on different parts of my body but still but I never gave up.  I was persistent.  I had to conquer this task!  One day I was practicing near the pool-side. I was so embarrassed that day because I ended up in the pool with my bike and so many people watching. I went home disappointed. I told myself, “never mind I will try harder tomorrow”. I was determined to learn this skill, despite the embarrassing failures that I encountered. On the 91st day, my body finally learned how to balance and I was riding a bicycle – IT  WAS BEAUTIFUL! The feeling was as good as flying.  I will never forget that day!
The moral is, don’t ever lose hope and give up. If I had given up on the 90th day, then I would have never seen the 91st day. Keep going and going, till you make it.

About the Author

Hitesh Ramchandani is now 20 years old and is pursuing his diploma in management studies at the Singapore Institute of Management. He is also taking a Neuro-linguistic programming course outside of school and is  a member of the Toast Master Club Singapore. His desire is to motivate everyone out there to never give up and to fight to the end. Most importantly, he wants to tell others, “don’t ever be discouraged by your problems because the bigger your problem, the bigger your destiny.”

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