Knowing Cerebral Palsy and Viraat!

[This posts helps in getting face to face with the challenges of a child detected with Cerebral Palsy. Viraat, a 6.5year old child, who needs support from people like us today for his medications and therapies to be able to walk and talk, to be able to express his excitement when he achieves that and to see a smile on a mum’s face for her child’s achievements.]

Harsha says, “Viraat was a full term baby delivered via C – Section. All her blood reports, sonography and other reports turned out normal and she enjoyed her pregnancy. Neither did her water bag burst nor did she dilate. Her due date was 23rd March 2012 and Viraat was born on 27th March 2012. What happened in between?

Her doctor delayed her delivery by 4 days. And that was a trigger of a challenged life inside the womb. She was induced pain on 27th March thrice but still she didn’t dilate. She was then immediately taken for a C – section. At birth it was found that Viraat ate his own stool in the womb. All necessary actions were taken at that time but when he came out, he did not cry at all. He was immediately referred to another hospital and was admitted in NICU in critical condition with the problem of severe perinatal asphyxia. Initially he was on life support ventilator and later brought down to oxygen and then completely off any respiratory mask. He was in NICU for 55 days.”

What is Cerebral palsy (CP) and its symptoms?

Cerebral Palsy is a neurological disorder caused by a non-progressive brain injury or malformation that occurs while the child’s brain is under development. Cerebral palsy affects the  muscle tone, movement (voluntary and involuntary), and motor skills (coordination).

Cerebrum, a part of the brain is responsible for the Muscle control. This upper part of the brain, if damaged, before,  or during the birth or within 5 years after the birth of a child, may result in Cerebral Palsy. Though Cerebral Palsy is not progressive, but the result of this damage is varied. It can affect vision, hearing, speech problems (delayed or completely not able to speak), learning abilities, sleep, tooth decay, osteoporosis, seizures and even behavioural problems. It all depends on the extent of damage towards a baby’s brain.

As babies grow, features as over/under developed muscles, leading to uncontrolled movements, slow writhing movements, unusual crawling, difficulty in grasping objects and even tying shoes may seem difficult. Spastic movements, Oral motor problems as swallowing, eating, closing the mouth along with hearing, eyesight and delayed speech are some of the typical symptoms of a child with Cerebral palsy.

Viraat has got the impact on his speech apart from disoriented muscle tone. This intelligent and music loving child, who wants to dance on Honey Singh songs and loves his bits of intelligence (like flash cards), is unable to talk and walk due to the complications, when he was just about to enter this world from a mother’s womb.

Watch how Viraat is faring!

https://www.youtube.com/watch?v=Kka629pXOME&feature=youtu.be

“After his birth until 2015, Viraat underwent Physio, speech and occupational therapies. He also had 40 sessions of Hyperbaric Oxygen Therapy (HBOT) in Mumbai. By this time, Viraat could only have good head holding and could work on his sitting abilities. All the other milestones are yet to achieve and a mom’s eye is waiting to see them flourish.

Harsha, Viraat’s mom says, we haven’t left any stone unturned. It has been a very emotional journey, being a mom, who wants to see her child, run, play in the ground, talk like other kids, dance to express the excitement and above all, feel like a a normal child. Harsha continues, It has been a very stressful journey, which embarked her on the doors of depression for a long time. With tears, she says, It is very upsetting to see your child in this state due to the negligence of the doctor. The happy moments to hold your baby in the arms for that warmth went away in the NICU for Viraat. Wish to undo the things and make it worth living happily, make it worth seeing your child enjoy the life rather than undergoing therapies.”

Causes of Cerebral Palsy :

The major studies says that most of the time the damage to the Cerebrum (part of the brain) probably happens during the first 6 months of the pregnancy(due to infections, health problems, a genetic disorder) or during the birth and the major reasons could be :

1. Maternal Health :

Certain active pregnancy infections as German measles (rubella), Herpes, Cytomegalovirus (CMV), Zika virus, Chickenpox, can affect the foetus’s Nervous system and result in brain defects. While most of these infections can be prevented if a mom has had active vaccinations for some of these infections. To-be-moms, make sure you are properly vaccinated, discuss it with your gynaecologist.

2. High Impact toxins :

As methyl mercury, enhances the risk of birth defects. Keep your exposure low, indulge in organic or good quality foods, with less of toxins and pesticides. Avoid drugs, alcohol, tobacco during Pregnancy.

3. Newborn Infections :

Certain Bacterial and viral infections as meningitis, encephalitis and at times Jaundice, if goes severe and untreated, can risk a baby for Cerebral Palsy. Don’t delay any infection diagnosed. Ensure that your child is vaccinated against infections which cause meningitis, encephalitis, Pneumonia, Rubella and Chickenpox.

4. During Birth problems as :

• Complicated labour or Delivery, wherein a baby may show respiratory problems at the time of birth. It usually happens when a baby is deprived of oxygen for a long time during birth or dropped or at times pulled out forcefully from vacuum extraction, or even a forceps injury. “Respiratory issues at the time of birth was the problem that pushed Viraat towards Cerebral Palsy.”
• Premature birth, i.e. before 37 weeks, earlier a baby is born, greater the chances are there of Cerebral Palsy.
• Low birth weight (less than 2.5 Kg) and further shedding the weight, more so in breech birth’s
• Multiple babies have a higher risk for CP.

Treatment for Cerebral Palsy :

The saddest part of this disorder is that there is “NO CURE” of CP. Treatments and therapies can just help a child get independence. An early diagnosis and a right therapy set helps a child in basic motor and coordination skill development.

“Viraat is undergoing his treatment with Doman International Institute, Philadelphia, USA since October 2015. In a period of 2 months after the inception of treatment, Viraat started to crawl like a lizard. He was then made to creep like a horse that he still does so well, exclaims Harsha. Then he was then made to stand in a standing frame for hours and that was a turning point. He can now (at 6.5 years)stand holding a dowel, sofa, against wall. He can also stand for a few seconds independently. It’s a really big achievement for Viraat and his parents! “

Viraat is on an Intensive Treatment program, which requires his family of 3 had to go US once in every 6 months.The Institute is coming to India in October 2018 where they will be doing evaluations for Viraat and take lectures. His physical program consist of Standing, walking under the ladder; Intelligence program consist of reading Books, bits of Intelligence, Facilitated communication; Physiological program consist of different breathing programs along with nutrition. He is also undergoing Aqua therapy, to learn balancing. 

“Whenever Viraat steps his feet on floor, he wants to walk. This drives Harsha more to do something for him. He deserves to be independent just like all of us.”

Life Care Plan :

As soon as the child is detected of Cerebral Palsy, a “Life care plan” needs to be established to support areas that need help, such as movements, learning, speech, hearing, Social and emotional development. This plan includes :

1. The accessories a child would need (as braces, wheelchair),

2. The therapies a child can undergo (basis individual needs) :

• Sometimes surgery as Orthopaedic surgery can help in hips dislocation, spastic movements. 
• Children will be given medication for stiffness and pain in the muscles
• Occupational therapy, helps with day to day life activities as tying shoes, eating, social development
• Diet therapy , so that children can focus on their diets which are rich in calcium, Vitamin D and Phosphorus.
• Speech therapist, to help in the vocal and speech delays.
• Educational program, to assist in a holistic educational plan, as many kids with CP are home-schooled (mostly in India)  

Harsha says, “As a parent with a special need child, we just can’t lose hope. I am trying to reach the stars and I know I will get there some day. God cannot be so unkind to Viraat and us. There are some more alternate therapies like Hippie therapy, Cranial Nerves, QRI Laser,  that we are thinking to try out in the future. If god closes one door, he certainly opens many more, and we have firm belief on this.” 

I’m sure with the small yet really big and challenging efforts Viraat and his family is doing, this little child, who was once declared immobile is sure to knock the doors of independence.

[I would like to know more advanced treatments for a Cerebral Palsy child, which can help Viraat’s parents know more about it. ]

Thanking Harsha for sharing her story with me and for being a really brave, loving and a patient mom serving her child.

Hoping, every child to live like a Prince!

Love Jhilmil

Real life of Viraat connected with the References :

https://kidshealth.org/en/parents/cerebral-palsy.html

https://www.medicalnewstoday.com/articles/152712.php

https://www.mayoclinic.org/diseases-conditions/cerebral-palsy/symptoms-causes/syc-20353999