My story....

Why me? Every time I ask this question to GOD and many I am sure in my position would do...I can hear only one answer...why not you? After 9 years of bringing up my special child with cerebral palsy, I realise what an extraordinary journey it has been and there has never been a dull moment in all these years...My life seems purposeful, more meaningful and challenging ... Along the journey I have met some wonderful people, who have helped me in my struggle.....My blog will contain some useful articles, links and I also encourage people who are working in the special needs sphere to share their contacts, so other people looking for resources can be benefitted... I value your feedback and would love to know if you are interested in any particular topic to be discussed ........


My story....


The beginning....
After marrying the man of my dreams, enjoying a great career run, my bundle of joy came in the form of my son Yatish. Even though my pregnancy in itself had no major problems, towards the end, we were worried about the growth of the baby...(maybe the stress of managing a start-up business, left me with little energy for myself and my baby). Yatish was born 2 weeks premature after a brief labour and forceps delivery, a tiny little thing with beautiful eyes. To top it all, he developed jaundice which prolonged for 12 days.

Physiological jaundice is a common occurrence among new born, which results in yellow colour of the skin and whites of the eyes caused by excess bilirubin in the blood, which is produced as a by product of normal breakdown of red blood cells. Very high levels of bilirubin, usually 25mg – can cause deafness, cerebral palsy or other forms of brain damage in some babies.

http:///kidshealth.org/parent/pregnancy_newborn/common/jaundice.html


This brings me to the most important issue, which I think is sadly lacking in our country is parent education, counselling and participation in decision making. As a parent of a newborn, I am entitled to know what is happening to my child and what options I have. When I look back, I feel completely short changed. I urge all parents to ask questions and not give up till you are completely satisfied with the answers. Because end of the day, you are left to face the consequences and the laws being lopsided you will never get any justice in this matter. Many of our doctors still do not take APGAR scores which give a good measure of the baby’s physical health and instead of just eyeballing, which is the norm especially in the non metros in India. This test is also important if you take your child for other countries for evaluation.

(http://www.mychildhealth.net/apgar-test-score-of-newborns.html)

The early symptoms...

Yatish lost almost 40% of his birth weight ( which is quite a bit considering that he was only 2.1 kg to start with....) and he seemed a bit stiff in his legs and had major difficulties in breastfeeding. He did not develop head control even after two months, but then he did achieve the social smile after 3 months, the only milestone he achieved at the right time and even today his smile is a sight to behold...

http://www.special-needs-hope.com/signs-of-cerebral-palsy.html

Once we noticed the stiffness in his legs, we asked the doctor what we could do and considering he had not achieved his head control, he advised me to start physiotherapy.....