Another SB Story near our home - Saideep Singh

It was 16th December 2012 and I was returning home after the Sunday evening mass with my Sister-in-law. I urged her to take me to the house of her aquaintance who had had a baby with Spina bifida, and who resided in our neighbourhood. She readily agreed. It was just a 3 minute walk from our church. When I saw the mother, I immediately recognized her- we often crossed paths when I went to Vineet's school for his CIC. And she would always give me a beautiful smile.She herself was very smart and good-looking, but at that time she looked miles away from how I had seen her... And then I saw the baby- head gone big due to Hydrocephalous , legs deformed, and then I froze! - The Mylomeningocele on his back had Still Not been operated upon and he was going to be 2 years old in April 2013! I was speechless for a moment or two and then I asked what his name was . 'Saideep' came the answer. I asked how could he be in that state for so long? (And I was begining to get sick in my mind). So the mother answered - We took him to various hospitals and they refused to take him in, and those who did,asked for Rupees Five lakhs and Seven lakhs for the entire Package, and we don't have all that money. I couldn't believe my ears. Its true the repair costs a good deal, but after13 years also it shouldn't go so high that babies must be left to die...But this fellow? this fellow wants to live- he's been putting up with all those sufferings all this time...I don't remember what else I spoke, but I promised the mother that I would do everything that was within my reach. I asked permission to take Saideep's fotos and use them for online donations. I seriously didn't know where I was heading - I just knew I couldn't let a baby suffer thus...

SAIDEEP SINGH on 16th December 2012 before his surgery

I came back home and showed my family members his fotos on my mobile and unable to bear the pain, I burst into tears.Seeing me so, Vineet too started crying.I was unable to sleep that night and kept thinking what to do..what to do...I messaged a few friends and relatives about going online with his case for donations.There was a second line of action which was more important- the medical route. I researched about that one too, rang up doctors and friends. One friend said- Put up his page and leave the rest to God. I sat up late in the night on 17th and floated Saideep's page on Facebook. I urged and invited people to start liking and sharing the page so it would reach out to those who could actually help. 24 hours passed by and the Page had only 18 'Likes'. I was angry so to say- I had around 175 friends and all they had to do was 'Like" the page, and spread the word, and the right people would come along. Then I realised, this is reality- Everyone was not supposed to think the way I thought, or wanted them to think my way. This is our world and each one thinks differently. I was a little disappointed, but kept at it. On the other hand, one of my very good friends, managed to procure the phone number of the Neurosurgeon who had operated upon Vineet 13 years back in Kolkata. I was nervous about ringing him up directly, but I had to do it. The phone rang but no one answered. I thought maybe God is telling me, This is not the day, and left it at that. Then I went asked Saideep's mum for his previous Medical papers and she immediately brought them to my house. She brought along Saideep so Vineet could have a look at him. She seemed to be carrying him around well.

So the papers said that he had been diagonised with 'Chiari Malformation Type II' as well. There was also an MRI done. But all they did was do tests and refer to another hospital. At least they could have shunted him so his head would not have increased so much in size..but no...What has the world come to.... So I rang up Vineet's Neurosurgeon again the next day and finally got to speak to him. He said he was still doing meningocele repair. He told me to ring up the Hospital for the expenses involved. So then I rang up the Hospital and they said it would be around Rupees Two to Three lakhs. I was a little depressed- we would never be able to collect that much money. Then Vin's dad rang up one of his Doctor friends and narrated the story and asked for some other Hospital where we could have this Special surgery. He suggested- 'Institute of Neurosciences, Kolkata". We looked it up on the net and found reasonably pleased with the site. So we decided we would first go to IN-K, check it out, and if it didn't work, we could always go to CMRI (Calcutta Medical Research Institute).

Christmas was at hand, and although I was dying to take Saideep to Hospital soon, Vin's dad made me understand that it would be better if we went after Christmas- everyone would be free and the holidays would make it easy. I agreed. Only, on 20th December, Saideep's mum rang me up and told me that his Mylomeningocele tumor on his back had started leaking!! She asked me if we could take him to a Doctor in Kolkata. I was in shock! I didn't know what to do. I spent the entire afetrnoon sitting on the stairs leading to the terrace not knowing what to do. I made up my mind that if I had to spend the money I had been saving for my kids, so be it. God will definitely help me find a way, of this I was confident. God bless my dear husband who was with me all the way- he helped me in his own silent ways...The ways looked so grim and hazy...

And then on 24th morning my dear friend Linny called from US. She had already promised me help for Saideep, but the amount she collected from her community there was unbelievable!! Oh I was so full of joy and thankfulness to her and to All those who had so generously donated for Saideep. And of course, to my God...Now I was confident that with that money, my money , and with some money coming into Saideep's bank account(which I opened immediately so my friends could do money transfer) as well as cash, we could get him admitted to any Hospital in Kolkata. And then on 24th evening, Vin's dad slipped and twisted his ankle on the stairs. So we had to wait some more. Finally on 28th December, me,Vin's dad, Saideep and his parents left for Kolkata. We first went to Institute of Neurosciences, Kolkata, and we were very impressed with this Speciality Hospital regarding Neuro cases. We met the Neurosurgeon in-charge, narrated Saideep's entire history and emphasised that we wanted surgery as soon as possible. There was another MRI done and the surgery was scheduled for 4th January 2013. Saideep's dad is an educated man and handled the Hospital errands very well. Maybe he was also used to them by now.So me and Vin's dad returned late at night that very day, while Saideep and his parents stayed back at a relative's place in Kolkata.

On 4th January, I left for Kolkata early morning and when I reached the Hospital, Saideep's mum was in tears.I was a bit jittery too. She hadn't had anything from the morning and no amount of coaxing would make her eat anything.Then Saideep was taken to the OT around 12 noon, and we waited patiently. While we were waiting, I went to have a look at the other patients on that floor (as is my old habit when I am in a hospital, you can say), spoke to some, and then I saw the SWEETEST, PRETTIEST, FAIREST ANGEL I have ever seen in my whole life!! She was an eight month old baby girl and she had Hydrocephalous( CS fluid in the brain). She had come down with her parents to have her 3rd shunt revision. I got talking to her parents and when the child's dad came to know about Saideep and Vineet, he said - Didi( sister), I request you to give me your phone number, so I can contact you when I have any queries. I did, and he rang me a couple of days back to inform that his daughter's head circumference was decreasing, but it was a very slow process. So I had to tell him that for Vin it took around two years to get to his normal size. So around 4.30 in the evening, Saideep was taken out from the OT and taken directly to the NICU. He was doing fine- we were informed. Praise be to God!


I had to be back with Vineet, so I left for home that day without having a look at Saideep, while others stayed back. I got some fotos and videos per kind favour of my Very dear friend, Germaine, who lives in Kolkata, and went to visit Saideep in the Hospital. Saideep was discharged from Hospital on 10th January and he stayed back some more at his Uncle's place in case any complications arose. Then finally on 14th January, Saideep returned home to us - cured of his pain and happy :)

And this is not the end of his story. Rather its a new begining for him as well as for his family. So much still to be done- the next step is to get his deformed right feet corrected by surgery- we all feel Saideep has very low sensations in his lower part of his body. How much, we'll know only when he starts to talk- and we are praying that God may help him do so soon. For now, we are happy that his appetite has improved drastically and his mum loves feeding him too. Its a good thing :)




SAIDEEP SINGH ON 14TH JANUARY 2013 AFTER HIS SURGERY

(FOR THOSE WHO ARE MORE INTERESTED IN SAIDEEP'S LIFE AND STORY, YOU ARE WELCOME TO LIKE HIS PAGE ON FB. I PUT UP UPDATES THERE NOW AND THEN. THIS IS THE LINK -

http://www.facebook.com/saideep.surgery#!/saideep.surgery