World Down Syndrome Day 2018: After 15 years of struggle this mother found hope to treat her son’s Down syndrome

World Down Syndrome Day is observed on 21 March

A mother-to-mother talk is always heartening and just before the Down’s Syndrome day, I had a chat with Usha Singh, a mother to three: two daughters and a special needs son who suffers from Down’s syndrome. This chat with her is what I will hold on to for a long time to come. Here is her story in her words:

I was 36 years old when I became pregnant for the third time. I was a working mother of two daughters, a research graduate, a college professor trying my best to juggle between work and home. My womanly instincts one day started nudging me that said a life changing event awaits me. Soon, I realised I missed my periods, after a home pregnancy test it was confirmed that I was pregnant.

Let me tell you not all pregnancy news makes you feel merry and happy. This news, to be honest, made me worry. I told my doctor that I was 36, by the conventional standards quite late to be a mother again. But my doctor assured that things would be fine and nurturing a life is far better that nurturing doubts. I did buy that advice and went ahead with my pregnancy. But deep down something kept bothering me, a lump in the throat feeling which never faded, probably being a mother of two and another one in tow was a little too much for me to calm my nerves. Here are tips to follow to get pregnant after 35.

Then the day came when my son was born, we were overjoyed, but the happiness was short-lived. The smiling faces turned into gloomy, expressionless mug. The doctor said in a plain unapologetic voice that my son was born with Down’s syndrome and that spelt doom for us. Down’s syndrome is a genetic condition in which a baby is born with 47 set of chromosomes instead of 46, a reason for the brain and body to develop differently. The extra chromosome or chromosome 21 that leads to this condition is the reason behind developmental delays and typical physical features of the baby.

My baby, my life

My life should have been shattered with this news, but surprisingly it didn’t break me down. I never accepted the diagnosis. I just did what I felt right, to get on with life and help my child get the right treatment. In my head, he was a child who needed a ‘little more’ attention. For a mother, who has a child with Down’s syndrome you don’t have to repeatedly tell her, ‘Your child is special,’ because every child is special and dear to a mother.

But I admit life with little Mehul was not easy. Down’s syndrome, of the many things, makes one’s immunity compromised and so he fell sick very frequently and needed a lot of attention. I could never ignore mild fever in his case, if I missed the paracetamol doses on time, it would escalate and lead to hospitalisation. At two-and-half years he suffered from severe pneumonia which was scary for us. Other things that followed was alopecia, thyroid dysfunction and muscle dystrophy. Well, these were only a few of the medical problems that I had to deal with, the behavioural issues were plenty. Thankfully, he never had an epilepsy attack or heart troubles that are common with these children.

When I became the default caregiver, I knew patience should be my middle name. And, I stood true to that name. The turmoil I faced tired me but didn’t wear me out. Unlike other kids, he could not follow the instructions, simple commands like come here, sit down, etc., forget about expressing his needs like hunger, thirst or sleep. I had to be by his side 24/7, take cues of his behaviour, discomforts to understand what he needed at that moment.

He missed his milestones and I never cared to complain about them to the doctor, as it was expected. He started walking when he was three with much help and assistance from our side. I remember one incident (when he was a year old) when all of a sudden he sat down on his own. I was almost in tears and even before I would smile in joy, he fell on the bed on his back. For the next six months, I waited for him to sit up again, but it took more time before he could do that. His speech is still unclear and even today when he is 15 years old, he can’t talk to express himself. How to know if your baby is suffering from developmental delay?

Meanwhile, I left no stone unturned to make his condition better – I tried homoeopathy, Ayurveda and also malish to make things better. Malish helped his droopy eyes look normal. I also resorted to herbs and other jaribooti treatments believing in hearsay with the hope that it will change his life. I went to villages and medical experts ran pillar to post to get help. Down’s syndrome has no cure. But all I wanted was to make sure I can give him a better quality of life.

From despair to hope

Years passed and his conditions with the limited treatment options improved marginally. I was constantly looking for a miracle to get some semblance of his life. Meanwhile, we devised a way to communicate with each other and with the family. He came up with his own sign language. He expressed himself by nodding his head, banging the table and swaying his body when he was happy. But I still face social ignorance and condemnation in public places. When we are out in a park or mall, other kids look at him either disapprovingly or get scared. I don’t blame them; the stigma attached to this condition is deep rooted in public. But for all the social scorn he received, his sisters made up for it in more than one way. They pamper and cajole him to the core. In fact, he listens to them than me when we want to get things done by him. He intervenes when they have their arguments to sort their problems. Yes, home is a haven for him.

From the time my son came to my life, I did slip in a way to give attention to the elder two. But they became secondary caregivers to him. And all that love did bring some change in him. Even though children with Down’s syndrome lack emotional quotient, he displays his feelings from time-to-time. If I ever scold his sisters, he reacts disapprovingly. When I feel lonely, tired and silently cry, he comes to me and holds my hand and sits by my side. This makes me realise that there is a silver lining behind the darkness. But to be honest, I still have problems handling his anger outburst in public places.

One day I read about stem cell therapy for muscle dystrophy on the internet. I contacted Dr Pradeep Mahajan – Regenerative medicine researcher, StemRx to know if this therapy could help my son too. Dr Mahajan explained that the therapy could help; of course, it can’t make him normal but can improve his intellectual levels, social acceptance and alleviate physical problems to help him be independent. I wanted to give it a try. Stem cell therapy is expensive, but I didn’t want to live with regret that things would have improved had I tried it once. So few months back I took him to Dr Mahajan, where an intravenous treatment of stem cells therapy started. In the course of the treatment, three injections were given over a period of three months and we did see results with the treatment.

After the treatment, the saliva dripping stopped, his hair started growing and his muscles eased to help with movement. We had seen a good improvement in his height too. Apart from this, his concentration and focus have also improved. He is able to take orders and act accordingly. The only flipside is since now his muscles are more mobile and strong, I have to spend more energy to drag him out of shops or streets against his will. A fungal infection that was breeding in his nail bed also disappeared.

These little changes do give me hope. I know I cannot be with him forever, but if he can take care of himself as he ages it would be a miracle for us, and I secretly pray he becomes capable of taking care of self. If I can witness a day when he wakes up on his own, goes about doing his regular chores – eats, bathes and cleans him it would be the happiest day of my life, and I am looking forward to it.

How stem cell therapy works:

According to Dr Pradeep Mahajan stem cell therapy is a promising therapy for kids suffering from Down’s syndrome. It is an intravenous therapy where three injections are given over the course of three months and booster doses are advised accordingly. The injections are given in the brain and localised area to improve the functionality of the area. Stem cells when injected fuse with the other cells in the area which also changes the genetic make-up of the cells to help them perform normal functions. These cells then grow into multiple cells that slowly help regain functionality to some extent. While this cannot cure a genetic disorder but can bring semblance into one’s life.

Image source: Youtube

Published: March 21, 2017 5:29 pm | Updated:March 21, 2018 2:43 pm

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