'DOWNS SYNDROME’ WONT LET YOU DOWN

The new parents stare at the baby with awe. The tiny baby in the crib seems to be a bundle of despair. What was it the doctors said? This baby will never be the child we were dreaming about? She has some terrible disease called Downs Syndrome…. She won’t be NORMAL, she will be RETARDED & slow to learn. she may be an IDIOT… what a shattering experience.

Very often, this is the first impact we give to the parents when a baby is born with Down’s Syndrome, these are the cruel words we bombard them with, notwithstanding the terrible impact they create. And ‘we’ means all of us, doctors, nurses, friends, neighbours, relatives, etc, etc. Unfortunately, neither do we have the knowledge and awareness about Down’s syndrome, nor are we sensitive to the feelings of the awe-stricken parents.
So, let us take a look at the real scenario, which is not that awful at all! This tiny baby in the crib is just as cute and just as promising as any other baby. Only thing is that she has an extra chromosome21 in her cells, that gives her 47 chromosomes to a cell. This causes some differences in her appearance and her system too.


The appearance though characteristic, maybe very sweet too. A very loveable baby with a sweet smile and very supple limbs is the common look. One cannot resist loving this baby.
Their brain development may be somewhat different, which often make them slow learners, but the good part is that most often their intelligence is just mildly deficient. Though early development may be slow, they do eventually learn to sit, stand , walk and run, as any other child. So with talking.













What the doctor should alert the parents about is the possible medical problems that may be associated, because timely detection and early management can save a lot of complications. So you may need to get some blood tests, X-rays, Echo-cardiography etc done as per your doctor’s advice. Be on the alert for constipation, cough and cold, difficult breathing and any other physical ailment and consult your doctor promptly.
Early intervention is very important for these babies’ proper development. Physiotherapy, play and behavior therapy, speech therapy and special education programs are all very essential to bring out the best in a child with Downs Syndrome.
What is the best that a child with Downs Syndrome can achieve? Most often they can live an independent life, with just a little support. They can often complete school education and train in various skills including fine arts and sports. Their special keenness in music and suppleness of limbs give them an extra edge.Often enough,we hear of a person with Downs Syndrome performing very well in his/her field.



Look at my supple joints
As a baby they are easy to handle and least fussy. They grow into cheerful, sociable kids, easy to mix and make friends easily. Even as adults they remain simple, soft and gentle… a trait so rare in today’s world.
So parents, be proud you have a child with that extra gene. Though a Downs, he will not let you down if you take proper care of him. And he deserves that extra care and affection too.


Life IS Amusing !

WHAT EVERY MOTHER SHOULD KNOW

Was my baby healthy at birth?
“Dear Mom, you brought me into this new land, don’t you want to know how I’m feeling?” this is what the newborn baby seems to be saying imploringly.
Sure, the new mother should be abreast of her baby’s condition:
• What’s his birth weight?
• Is he premature?
• Did he cry after birth?
• Is he feeding properly?
• Is he sick?
• Does he have any abnormality?
• Does he need any special treatment?
During the baby’s stay in the hospital it is preferred that the mother be constantly involved in the baby care. This early mother-child bonding is the 1st step of early intervention to support normal development.

Is my child developing normally?
This is a question that comes to every mother’s mind as she fondly cradles her baby. But unfortunately, very few have a clear concept of the developmental milestones and we professionals fail to provide the required information to them.
In an attempt to make up for this shortfall, I put forth here a simple list of achievements of your little master, for you mothers to go through:
At three months of age, most babies:
• turn their heads toward bright colors and lights
• move both eyes in the same direction together
• respond to their mother's voice
• make cooing sounds
• bring their hands together
• wiggle and kick with arms and legs
• lift head when on stomach
• become quiet in response to sound, especially to speech
• smile
At six months of age, most babies:
• follow moving objects with their eyes
• turn toward the source of normal sound
• reach for objects and pick them up
• switch toys from one hand to the other
• play with their toes
• recognize familiar faces
• imitate speech sounds
• respond to soft sounds, especially talking
• roll over
At 12 months of age, most babies:
• get to a sitting position
• pull to a standing position
• stand briefly without support
• crawl
• imitate adults using a cup or telephone
• play peek-a-boo and pat-a-cake
• retrieves a hidden toy
• wave bye-bye
• put objects in a container
• say at least one word
• make "ma-ma" or "da-da" sounds
At 18 months of age, most children:
• like to push and pull objects
• say at least six words
• follow simple directions ("Bring the ball")
• pull off shoes, socks and mittens
• can point to a picture that you name in a book
• feed themselves
• make marks on paper with crayons
• walk without help
• point, make sounds, or try to use words to ask for things
• say "no," shake their head, or push away things they don't want
At two years of age, most children:
• use two-to-three-word sentences
• say about 50 words
• recognize familiar pictures
• kick a ball forward
• feed themselves with a spoon
• demand a lot of your attention
• turn two or three pages together
• like to imitate their parent
• identify hair, eyes, ears, and nose by pointing
• build a tower of four blocks
• show affection
At three years of age, most children:
• throw a ball overhand
• ride a tricycle
• put on their shoes
• open the door
• turn one page at a time
• play with other children for a few minutes
• repeat common rhymes
• use three-to-five-word sentences
• name at least one color correctly

Of all these, 4 achievements must be noted:
• Social smile by 2 months
• Head holding by 4 months
• Sitting alone by 8 months
• Standing alone by 12 months


What is developmental delay?
A developmental delay is any significant lag in a child's physical, cognitive, behavioral, emotional, or social development, in comparison with the normal.
A baby's rate of development is determined partly before birth, primarily as a result of genetic make-up and partly due to various physical insults during and just after delivery. Normal development is again quite flexible, occurring over a range of time. Definite deviation beyond that range in any sector of development is developmental delay. When a child consistently reaches developmental milestones much later than other children, a professional consultation is usually warranted. Few babies develop at a uniform rate; most develop quickly in some areas and slower in others. Some babies reach most or all developmental milestones slightly later than "average." As long as a child's development falls within the broad range that is considered normal, reaching one or more milestones late is generally not a cause for concern.
Several developmental areas are of interest: gross motor skills (e.g., crawling, walking), fine motor skills (e.g., grasping and manipulating objects), receptive (understanding) and expressive (speaking) language, self-help (e.g., feeding, dressing), and social and play skills. While it is important to consider each of these areas, some are more important predictors of developmental difficulties than others.
Gross motor skills tend to be of particular importance to parents. They are readily observable and easy to compare from one child to the next. The timing of concrete achievements such as first steps is usually easy for any parent to pinpoint. But a particular achievement such as early walking bears little relationship to later intelligence. Communication and social skills are generally more important in understanding a child's developmental progress.
During the first half of the first year, baby's communication skills are largely nonverbal. Smiling, making eye contact and turning in the direction of a familiar voice, are all signs that baby is connecting with and relating to his social environment. Later in the first year, babbling begins and words may start to appear. In most cases, baby's vocabulary will continue to grow by leaps and bounds as he moves through the second year. Again, however, it is the ability to use language to communicate and relate to the social world that is most important. A child who has a limited speaking vocabulary late into the second year, but is able to communicate needs through gestures, point to named objects in books, and follow simple directions, is most likely not exhibiting significant developmental delay.
The nature of a child's play also provides important information about intellectual development. Very young children tend to play alongside, rather than with, other children. Early play consists largely of using body and senses to interact with the environment. During the toddler years there is a move toward pretend play and increasingly interactive play with other children. Flexibility and creativity become more evident as a child begins to engage in symbolic play (e.g., using a block to represent a car) and role-playing (e.g., "I'll be the mommy and you be the baby"). Steady progression toward more social and complex play suggests that development in this area is on track.
Some red flag warning signs that a child's development may not be on track include:
0-2 years:
• Little interest in surroundings and caregivers
• Absence or minimal eye-contact or smiling
• Lack of responsiveness to sound
• Absence of babbling by end of first year
• Failure to walk by 15 months of age
• Failure to use hands to manipulate and explore objects.
Toddlers (2-3 years):
• Little interest in other children
• Limited use of words or gestures to communicate needs
• Repetitive non-communicative or parrot-like speech
• Very repetitive, non-purposeful play (e.g., focuses only on parts of objects such a wheels, knobs; obsessively turns pages of book without attending to or recognizing content).
Pre-schoolers (3-5 years):
• Speech that is very difficult to understand
• Little or no pretend or imaginary play
• Little interest in social interaction
• Difficulties with balance, running
• Difficulty using crayons or scissors, manipulating small objects.
What are the different developmental disabilities (NDD)?
At least 8 percent of all children from birth to six years have developmental problems and delays in one or more areas of development. Some have global delays, which means they lag in all developmental areas.
Common neuro developmental disabilities (NDD) include:
• Cerebral Palsy
• Mental Retardation
• Speech and language disorders
• Attention Deficit Hyperkinetic Disorder (ADHD)
• Autism
• Learning disabilities
• Visual and hearing defects

Where do I go to?
Consult your Pediatrician immediately.
Remember to get an Eye and Hearing test done.
You will be referred to a Child Developmental Clinic for Early Intervention Therapy through a team approach.

What is done for Early Intervention?
Early intervention starts right from the baby’s stay at the NICU. The environment is rendered developmentally supportive through the following:
• Optimizing lights in the Nursery & mimicking diurnal variation
• Reduce noise to minimum
• Use of soft music
• Club painful procedures & interventions
• Non nutritive sucking
• Tactile stimulation through soft stroking and caressing.
• Kangaroo mother care

Later, early intervention is continued through the provision of :
• Stimulation in all sectors of development
• Stimulate the child through the normal developmental channel and help him to achieve the next milestone every time.
• Passive exercises to prevent stiffness
• Parents are encouraged to constantly provide appropriate stimulation.
• Counsel the parents. Assess the parenting skills and provide necessary education.

What can I expect?
Early Intervention is neither a single dose therapy nor a magic medicine. We do not expect miracles that the child will be absolutely normal, coming 1st in class or winning an obstacle race. But we help him to win his own obstacle race.
Through EIP the child gradually achieves the best of his potentiality. He is taught to perform to the best of his ability to survive independently in society. His strong points are brought into focus, through which his life is made purposeful.
And again, in some, much is achieved beyond expectation, bordering on a miracle!
The take home message is “Be patient and sincere, you will be rewarded.”

HOW IMPORTANT IS EARLY INTERVENTION?

We often refer to a person as a ‘complete man’. Have you ever wondered what we exactly meant by ‘complete’? We all seem to be complete; nobody has seen a half-man after all! But no, completeness encompasses many a parameters & dimensions.

A baby grows from a neonate to a toddler, and then through the stages of childhood and adolescence, gradually evolves into an adult. All the while he grows in length, breadth and weight; his sensory perception, cognitive ability & intelligence develop so that he gradually gains control over his own self, then over his surrounding environment. The better control he has over himself, the more poised his personality becomes. The extent and magnitude of his control over his environment determines his level of success. This constant evolution starts from the moment of conception of life. It occurs in different dimensions: physical, mental, intellectual, emotional and spiritual. Evolution to the fullest in all these dimensions ultimately produces a complete personality.

We, the care-givers of small babies, visualize this evolution when we think of his growth & development. Any deficit, any deviation at any point will curb the blooming process. A thousand and one deficits may be silently residing in the baby’s system, which, if not identified in time, will manifest as a hindered development in later days. For example, a child who doesn’t learn to smile in time may not learn to interact and play like other children and he may develop mental retardation later on. Similarly, a baby who is late in holding his head may be late in all limb activities like sitting, standing, walking, etc. So all who care for babies and children must know the markers of normal development and must learn to pick up deviations EARLY.

How does this early detection help? Any inherent deficit in a developing child can be supported and the process of development in that area enhanced through early intervention. It’s like offering a hand to a person unable to climb a high step. He can make it with your help and the next time he has the confidence to try it himself.

What exactly is early intervention? It is a comprehensive process, by means of which stimulation is given to the child in areas where his development is faltering, thus guides him through the normal developmental channel. Through these techniques the affected brain parts are stimulated to become more active. But how can a dead cell in the brain become alive and active? It has been proved that though brain cells do not regenerate, synapses (connections between cells) are regenerable and with early stimulation healthy brain cells, through new synapses, take up the job of the damaged cells. Thus brain activity can be made to improve. This plasticity of the brain is made use of in early intervention techniques.

Who does this early intervention? As different aspects of brain function, like gross motor (sitting, walking etc), fine motor ( picking up things, handling etc), cognitive
(understanding, imagination etc), language, learning etc may need to be assessed and supported, this process calls for a very well co-ordinated team approach. The team comprises of a developmental Pediatrician, Ophthalmologist, Psychiatrist, Physiotherapist, occupational therapist, developmental psychologist, speech therapist, special educator and counselor. Whatever these specialists have to offer need to be conveyed regularly to the child, and, who else, but the mother, will happily render this effort 24 X 7? So she remains the pivot of the early Intervention program. It is thus obligatory for her to be well informed and convinced about the whole approach, to get the best benefits for her child. This is a long process and calls for a lot of perseverance and patience to reap the ultimate reward.

So, mothers (& fathers as well), get informed about your child’s normal development and danger signs to be identified. Next time we will talk about these issues.

How could we prevent this distortion?

'Born to bloom but fated to be nipped'
A flower in full bloom is beauty personified. Every bud appears with the potentiality to bloom to the fullest, to radiate all its beauty and fragrance. Yet so many get nipped at the bud, so many wither away. Have we ever stopped to ponder whether this loss, this wastage could be prevented? Wouldn't the world be so much more beautiful, had all the flowers blossomed?

Every time I look at a developmentally challenged child, this question keeps coming back to me. Can we just sit back and watch the bud get distorted and wither away?
For every 1000 otherwise healthy babies born, 3 are going to be spastic, with stiff limbs and difficulty in ambulation, 2-3 will develop autistic traits, mental developmental delay & retardation to some extent will be noted in 20-25 children, of whom 4% will have profound retardation, 7% will have moderate problem % rest 89% will have mild retardation. Another 30 children are expected to develop Hyperactivity Syndrome, which we call ADHD. Later, as they start going to school, 16-20 children will develop learning disability of some sort. So out of these 1000 delicate buds how many are going to bloom to their fullest? Quite a grim picture, isn't it?

Let us take a closer look at the problem and try to find out whether we have anything to improve the present scenario, and who is to shoulder the responsibility?
A developmentally challenged child may present in various ways, with various disabilities, of different degrees, associate with a wide spectrum of complicated neurological diseases, all arising from a multitude of aetiological (read causative) factors. Confusing, right? No, I'll not go into any further medical jargon. To put it simply, the gamut of the problem is immense, both in prevalence and severity. But the silver lining lies in the fact that severe problems and grave presentations, though difficult to diagnose and treat, are relatively much rarer. Conversely, the milder varieties of developmental delay and retardation are more commonly met with. They are caused, to an extent, by environmental factors, hence are somewhat remediable and reversible. Milder mental challenges are prevalent in the weaker section of society where nutrition, basic health care, environmental stimulation and education has a lot to do with their intellectual and cognitive stunting. These challenged kids create a greater burden to the already compromised living of these poor families. Developmental challenge;;; a torture for the child, a source of anxiety and burden to the family, a burden and negative resource to the society.

I'm sorry if I'm sounding too gloomy. No, the scenario should not be so grim if we take a little effort, for much of this problem is amenable to correction, provided we act EARLY! Detect early & intervene early to prevent the disability from becoming really disabling! Moreover, much of the challenges & disabilities can be overcome or circumvented to allow the child to function much more effectively and efficiently, utilizing all his potential.
This is exactly what we mean by the common medical term of 'Early Detection and Early Intervention.'

Now the question comes, how early and by whom? In other words, who is to shoulder the responsibility and when?
By early we mean as early as possible, preferably at birth. Why? A baby's brain develops most when he is in his mother's womb & the 1st few months of life. And coming out of that pleasant home called 'mothers womb' to this angry world & surviving here is a trial for the delicate baby. Any maladjustment here can have a bearing on the child's developing brain, giving rise in later life to a developmental challenge. These perinatal and early infancy assaults can leave tell-tale signs, which if identified in time, will give us a premonition that the child may develop a disability. Also, as the baby grows, he can show subtle signs of a developmental lag, which can be picked up by a searching eye. We tend to ignore these minor signs and put it off by saying," It'll be OK as he grows older"....only to admit the disaster when it stares back at us when he really grows older.And this 'we' includes the parents, grand-parents, care-givers, neighbours, even physicians!!! Blissful ignorance!

So, dear parents and grand parents, please consult a developmental pediatrician if your baby was born too early (preterm) on too small (LBW) or was very ill after birth, had to be kept in the NICU. Keep a vigilant watch on how he grows : does he smile, does he hold his head up, does he sit & stand, does he talk in time? Does he see & hear properly? Does he look into your eyes? Does he play the way other babies do? Any suspicion, don't wait, consult your doctor. Dear doctors, please acknowledge a delay or aberration when you note it and for Heaven's sake, do not pacify your client with a "Don't worry, it'll be OK" unless you're dead sure. If it's not your special domain, refer to a 'development' colleague.

Early detection calls for early Intervention. Some problem in the tiny brain cells is preventing the child from functioning normally. If these weaker areas of the brain can be given constant & proper stimulation, they will grow to the best of their potentiality. Moreover, neighbouring areas of the brain can lend a helping hand. Thus the child can learn to improve his skills to the best of his ability. He is also taught to circumvent his disabilities by using his other acumen to perform a particular act. Thus he adapts to life in a more effective & purposive way. All this takes time and patience, but the reward at the end of the day is really fulfilling. The wide smile on the mother's face and the confidence in the child's look will surely tell you that.

This early intervention is not a single dose therapy. It has to go on and on and on. It needs specialized team effort : a team of specialists including a developmental pediatrician, a developmental psychologist, psychiatrist, ophthalmologist, ENT Specialist, a physiotherapist, an occupational therapist, a speech therapist, who will work with the child at regular intervals, through play based interventions, but the pivot of the team remains the mother, who will effectively work with the child day in and day out. It is her perseverance, on which the final show depends! A confident and patient mother wins the race. We have many an example of such battle-winners.

Every challenged child who learns to live a purposeful life, who attains the best of his potentiality, is one more happy person on this earth, with one more happy and content family surrounding him. We thus lighten the burden of one family, the social burden by one unit.

What a divine pleasure to see that smile of fulfillment on the lips of that little 'different child' at the back!
So, though a deformed bud, it wont wither away. It will bloom and it's deviant beauty may surpass the normal flower!