A mother helps her child see

 I am DR. Samyukta, practicing anesthiologist from Chennai. Though I had read of nystagmus and its types in 3rd year of MBBS, I had nott seen a case of nystagmus  during the course.when I noticed it at 9 months of age in my daughter, I was thinking that it will settle down with age as congenital squint.

Even at that time I did not know that "shaking of black ball is “nystagmus".This shows the  importance of practical knowledge /clinicals in our profession.

  After 6 months , ie when she was  about 1.5yrs I took her to opthamalogist for squint, even at that time the shaking was not observed by doctor, after 2 weeks I myself presented with the complaint of shaking  and it was the first time I came to know it as "NYSTAGMUS". I was shocked, felt bad about it. The doctor had referred to a paediatric ophthalmologist who is experienced in squint and nystagmus surgeries.

                                       

Without reading   much of it, we went to for consultation where he said observee for null point direction and we would operate and it should be within 4 yrs for best results, it was the first time when she had eye drops. being in medical field , that too anesthiology I know the risks, complications,  psychological trauma , mishaps  that can take place during surgery. Thinking we can get operated in UK we continues with our plans for travel.Though scared by the surgery, till then we had a positive hope things will settle down and her eyes will be normal after it.

            

  But things have changed after the consultation in UK. We did ERG  and MRI, we came to know she is having cone dysfunction with nystagmus being defect in afferent system nothing can be done.

He explained the most important points, how nystagmus eyes see the world.

As all are aware, consultation in UK is a process of 5- 6 months, before we understood how her eyes see the world, we troubled her a lot. I  used force her to sit away from TV, to look straight and talk , poor girl she even tried to see straight, whenever  that flashes in my mind I hate myself.I searched   what might be the causes of cone dysfunction, and I found in one of researches that  when foetus gets exposed to bright light , it damages its retina. I hated myself more because I was working in operation theatres until 9 months and even I did CPR at 8 months of pregnancy. Even today I feel my profession is a curse for my little one.

What really helped me was not medical books but internet  and blogs.

When we hear the word  ‘cone’ one first thing which comes to our mind is colour blindness.Intial she use to even get confused with green and red. Everyday I used show apple to tell her it is red color and leaf for green color, slowly she started to identify them correctly.Now her identification, colouring everything is perfect.All these things are shared by other parents

I have joined the nystagmus network UK, which taught me how parents should support the kids. I am most thankful to it.With idea to help other parents of nystagmus kids in india I have started Nystagmus Group India.

The main reason for starting this group to prove to my kid that she is not the only person with this problem, there are many persons like her and how they cope up in Indian scenario.the feeling that someone is there with similar problem like me, itself  boosts their self confidence.

IF we really know what is the problem , we can come up the solutions, but for it we should understand the problem thoroughly.This is the most difficult part in nystagmus.Even myself being in medical field took nearly 2 years to understand it, what would  be the postion of non medical person??? Commom man???At present I am working on this aspect,this should stop with face book, it should reach all kids and hope I can reach this in couple of years.

                EDITORS NOTE: Thank you Dr Samyukta for your words. You are so right, knowledge is power. And in todAys age knowledge is at our finger tips. But as a paediatric ophthalmologist I have realised that with knowledge, patients and parents need empathy,need support; and that is where support groups come into play. I have learnt a lot about handling nystagmus patients from the facebook support groups, especially from our own Indian group. you have taught me from your own examples, how you make your daughter brush her teeth, help in her homework, spread the message in her class rooms, these were issues which I earlier did not address as a paediatric ophthalmologist. today one of my questions to my patients is "do you have facebook? or internet access" so that they can get in touch with other parents/patients with nystagmus.

other than that this story deals with a universal topic- of a mothers guilt. There is no escaping that, as mothers we are wired to blame ourselves. child crying at night, child not eating well, child having a temper tantrum, and in India they go a step further and blame mothers for having a female child. As a paeditric ophthalmologist I assure you, you did not cause this to your baby, and as a mother I applaud your quest to provide the best to your child, as well as understand her physical handicaps so as to better help her adjust. 

another important lesson here is acceptance. As Dr Samyukta says, until you accept your child has a problem, you will not be able to help her, or find solutions. like in Nystagmus, trying to make your child look straight (when she CAN'T, or making her soit further from the TV or board (WHEN SHE CAN;T SEE) arte classical examples where parent refuse to accept that their child has a problem. Acceptance is the first step to solutions, not cure in many cases, but solutions nevertheless.

to join the nystagmus group click here

to read more stories by doctor parents :click  here