Her Son got COVID MIS-C & It Changed Their Lives

0:00 [Music] thank you so much thank you for having me on with me thank you um i want you to step back a little and um tell me what um what was the starting point of

0:33 drafting that letter right so so walk us back to when it all started and so far yeah so actually um you know it was the april 14th like i've mentioned in my letter when uh you know we were having just a normal a normal day in our lives and and the day kind of ended absolutely with no uh you know no alarm bells nothing it was just a it was the completion of a day like we've had our

1:02 days and it was about three o'clock in the morning when my daughter walks into our room and uh she said she i mean she had fever and we were we were a little okay about it because she's probably been exhausted she was studying really hard she was keeping up the burning she was burning the midnight oil and so we kind of administered a paracetamol for her at about three o'clock in the morning and she kind of went off

1:28 to sleep at eight in the morning she came back saying she's lost her sense of smell she's lost a sense of day she was pretty uneasy the entire night and you know these are very very common symptoms and it was kind of inevitable but we did the test or we immediately called the technician and we did the test and we didn't want to take any chances with her because her body were right around the corner and so she tested positive we kind of

1:54 isolated how we were quarantined ourselves and everything everything was being observed just the way it needed to be absorbed now you know we don't live in palatial houses in bombay right so there's always that thing looming on right behind you that you know the other child should not get affected so we were we were keeping him very very you know away from her i was the only one who was interacting with her around eight to nine days it was i think

2:25 about 23rd of april you know we had a assignment in school we had to bake a cake for william shakespeare's birthday and uh we we did all of that we baked a pound of flesh uh cake for and we recorded videos and we were having a very fun evening and then at about 11 11 30 we retired for the day and it was two o'clock when he woke my husband up and he said i'm feeling extremely uneasy now the natural

2:56 process of thought was that he's exhausted he's had a very late you know very exhausting evening doing all of this and he's just the kind of child who's extremely effervescent and you know always hyper so he's 11 he's 11. he's 11 he's in the sixth standard and we put him or we put him to bed and then the fever started raging at 10 in the morning and it just accelerated

3:26 it was about 150 103 and it just kind of you know through the day it did not ebb at all and we kept administering paracetamol again both my husband and i are not the paranoid kind of individuals fever is just something that children get we're not new parents either right so we don't tend to get extremely worked up about these situations either sat this was friday saturday sunday the fever just did not

3:57 relent and we kept uh you know doing the whole compressions and everything now what was the what did you do did you decide we didn't know we did not because we kind of just assumed that he had tested positive or he just had a bad viral infection at that point we had not tested him however i do want to state that my husband has antigen tests at home you know which we did do and which was

4:24 negative but nevertheless they are 50 percent accurate and they're not full blues the thing that was kind of ticking in my brain was the fact that even with fever a child does not become listless to this extent and he was just not waking up at all the only thing we would be able to do is up till that point he was even able to take a bath on his own he was able to brush his teeth he was able to come out in the

4:50 bed in the living room and sit with us however on monday my husband did not want to take chances he was like let's just do a battery of blood tests as well as um you know the rt pcr the blood test was to rule out any malaria any typhoid all of those things now when his reports came he was he tested negative for covid and which was a little it was like a real shock right because we were like

5:17 that was the most normal you know diagnosis that he had tested positive because i already had my daughter positive at home right and the revitals were were kind of not normal but they were not abnormal but then what happened as a consequence of that day after day was he developed a lymph node in his neck even then everybody but the fever went away on tuesday so what was the other conclusion the fact that you know the fever has

5:45 subsided but the body has come up with some kind of glands which you normally assume then he started severe diarrhea severe vomiting and the other thing was he had become completely unresponsive so what would happen is he was just wake up you know he would have he would we would probably force feed some juice and then he would go back to sleep and we had one vital which did not come in the blood test that we had done on

6:14 monday which came on wednesday which was the igg report and that was the report that kind of you know brought everything to a spiraling downturn because his vitals were 20 times higher he was 186 when he should have been on the perimeter of 20 and so that's when the doctors were you know you have to admit him in the hospital otherwise this case is going to turn extremely uh serious and i mean the word was fatal i mean i don't want to repeat

6:43 it now but because my intention is not to create paranoia my intention is to create awareness because we were off guard and this is a family of doctors you know with with access to the best medical attention and that's when we realized he had misc which was relatively unknown to you know everyone so my point is that you realize that there are postcode complications that we are completely unaware of and we are only focused on what are the

7:11 symptoms of kovin and not what happens after that especially in children but uh tell me when do you think he got and you you say this as post kobe but just for everybody who's a layman right yeah why do you think the kobe happened and do you think you missed it and that's why you feel or came in a different because he does it negative each time correct now see the thing is that what was baffling to us is

7:37 how did my daughter take get it right because my daughter was literally kept like a porcelain statue we were not allowing anything uh you know no external access to her at all i reckon uh nivan tested kovid positive four weeks before because typically this reaction comes three to four weeks after you have tested positive but the thing is the the mystery is that he was completely asymptomatic so we had no we had no indication now if

8:08 the child had had certain behavioral changes or certain physical changes even then my husband would have been extremely quick to pick it up right because we were watching out for it but the reality is when there was no change how would you how would you anticipate that he's positive and that's where the danger you know the danger lies because we've just got to be vigilant on the signs now can you can you predict an asymptomatic covet positive of course

8:36 not you know you're not going to look at the crystal ball and say oh you know let's just keep on doing tests with the child you can't do that but you've got to watch out for the red flag it was positive four weeks before yeah before the first fever for mis yeah and how did you detect that how did you decide to get tested if he was asymptomatic we didn't we tell we did not test him at

9:00 all it was because my daughter were tested positive yeah and then as a result of the eight days later when he felt very sick that's when we took the test we did not take the test prior at all because there was no hint of covet in my house until that point of time you know so we didn't we didn't feel the necessity to you know sort of take a test and even though it was always back in

9:26 the back of our minds because my husband was stepping out he was treating covet patients but i mean there was no indication there was no sign there was no red flag so tell me that given that your husband is treating covert patients has he seen a case like that before very strangely very strangely and very co-incidentally he saw a patient and he saw an misc case just yesterday and it is amazing how well equipped he was

9:54 and you know how much awareness has happened as a result you know and i consider myself extremely lucky that this reached out to the kind of audience that it did because immediately you could administer you know the right kind of tests and you know the detection because early detection is the key early detection is the key to resolve this and when my husband was in the hospital with my son he saw two cases of misc my son was not admitted in the

10:22 covet what he had a private room and that's when he saw two more cases and one was a one and a half year old child you know wow yeah so one and a half year old infant who had been uh diagnosed with misc so so the point is it's all there we cannot discount we cannot we cannot live in a bubble thinking that this isn't going to happen to our children and i reckon i mean i think

10:49 that's the that's the message i'd like to give everybody that whilst we all would like to live in this you know hope that nothing happens to our children but the reality is it couldn't we just need to watch out for it right tell me when um when he had the fever he was in the ward um what are i mean i obviously i'm not i don't want to know the medication but what is the what's the treatment like so they are

11:19 cheating symptomatically because my point is there is no history for the doctors to follow either right there's no data or there's no previous or past experience so how what's the line of uh treatment are they just continuing to treat symptomatically so is this when he was in the hospital after he was detected or before no the treatment is extremely aggressive after you are treated with misc now because my son had reached a very serious point you know he

11:50 had to be administered with immunoglobulins he had an iv drip with him he was taking external blood thinners and now to the state he's on steroids and his entire vitals had to go in for you know for a sonography so they had to do a stenography on his kidney they had to do a 2d echo on his heart so if it reaches that point then the treatment is very aggressive you have to get the vitals under control so it's a

12:17 proper three to four day aggressive treatment if you detect it early then clearly the treatment varies right but i had an experience of of the worst of reaching the pinnacle so yeah the treatment for a child is pretty aggressive if they reach the hospital level stage you know right um also at this point because you said the point where it was aggressive what would you tell to parents um that what would the red flags for you be

12:48 yeah so i think fever that is a heavy fever that lasts for more than 24 hours i think the most important thing is to see a listless unresponsive child because even in fever children are pretty they're pretty there right they respond whilst the crocin or any paracetamol is being administered once that fever comes down the ch the children are not fined for the four hours that the that the paracetamol is acting in their body but if they are completely listless they are

13:19 completely unresponsive they are so tired they are constantly sleeping then i think that's a very big red flag rash on the body any kind of swelling or any kind of lymph node the other sign which my son did not have is also swelling of the tongue you know those are the kind of things that you instantly need to reach or watch out for now in his case what happened is that the symptoms started coming one after

13:47 the other typically from what i have read now of course i'm like i said i'm not i'm always qualified i'm not a medical professional my husband would be able to answer these questions in a different format but the reality is that most times these symptoms come together they don't come one after the other but i think a persistent fever that lasts for three to four days which is high i think that in itself is a very big red flag to

14:12 watch out for so don't just assume it's a viral infection you know right um also tell me um did you ever question why me or you know actually mansi funny you ask this question but last year i think everything was happening to us i mean i'm i'm look i look after the marketing operations for a hospitality company uh mariet international and last year this whole thing was there you know why me why you know why did this happen and i

14:44 started a spiritual journey of my own and so i kind of i was in a very solid mental space to handle the pressure and the stress and i never i never questioned why me my question was why why the child you know and especially a child that has you know that has that has shown so much resilience through this entire lockdown all children have i don't single out my children i think as a as a as a

15:13 stakeholder fraternity they have adapted to this scenario so much better than adults right i mean it's commendable how children have just been expected to seamlessly get into what is a very abnormal way of existence and really affects their development in a very big way because there is just simply no social interaction and so my son was you know adapting to that and he was finding his own ways to keep himself happy and i could see that there was a lot of

15:44 confidence development and very strangely he was just very content in the best friends a lot i'm not denying that so yeah that was a very big like you know just when we had come to a point when we had fitted ourselves into this new mould why why deal with this my husband has been treating forward patients since the lockdown and then for him to come to this point when it you know his own child had reached

16:15 that point of seriousness yeah i think that was the that was the tussle internal tussle but i must say that my adrenaline was kicking in in a very big way the only time i broke down was when i heard that it had become fatal or it could become fatal so after that 10 days that i went through with both my kids i think that was the point when i kind of you know when i kind of broke down this

16:41 was hours before he was being admitted to the hospital but both my husband and i were very determined that you know this this kind of emotional energy should not pass on to nivan because he had to fight it you know and he was under excruciating pain you know with everything that was happening to him and i think the only point when as a mother i felt that it was a very big sacrifice i made was because i could not

17:08 be in the hospital with him you know it was only one parent and between us we decided that my husband was the better parent the more informed parent at that point of time you know because even doctors right they've reached the end of their patients so they don't want to talk to a harrowed mother they know they have no time for bedside manners they want to talk clinical or language and that was what my husband was equipped to do so

17:34 when he was in the hospital i felt that you know there was a there was a huge part of me that was going through a lot of turmoil and especially because he refused to come on video calls or he refused to talk because i think he was processing his own trauma and his own emotions and so that i think as a mother i felt that you know i mean it shouldn't come to a point where he should feel that you know my

17:57 mom was not with me at this juncture but it was a big sacrifice i would think you know um tell me how was it like when he's he was back and you knew that okay now this is behind you you know actually i wrote the letter the night that he came back from the hospital because i felt that my emotions when i write that or when i write that article i never expected the article to go this

18:22 viral to be really honest with you it's it's really it's really gone mean i mean and i'm so happy that that happened simply because i felt that i needed to do something to create this awareness and knowledge and if it helped even one child it was worth the pain and the anguish that he has gone through and we've gone through as a family and the reality was i was processing my own emotions when i was drafting it out

18:49 because i felt it was cathartic and i felt that you know i would heal if this reached if this knowledge reached you know parents who are struggling and who you know who could be on the brink and you know they don't have that kind of access and they don't know what to watch out for so i think the letter proved to be a to prove to be a very big healing process for me as well and i also am the kind of

19:13 individual who gets healing from pending my words down so that was really you know the turning point right um the last of it um now that he's back home what are you how i mean is there protocol on how yeah needs to be at home will there be do you feel like there is there is uh postcode trauma which everybody is talking about that that you feel discard in many ways that you need to address

19:43 yeah i would say yes to that and i would say no to that as well we're trying to normalize our family in a in a way that you know he doesn't really feel the he doesn't really feel the trauma but can i say he's 100 not feeling it the answer is no he's become quiet he's become more restrained than he was slowly slowly it's coming back but it's there so i believe children can't express themselves like the way we can

20:11 so they don't know what they are feeling and i i do see the the difference to be honest with you he still needs his diet needs to be monitored as well he's still on oral steroids so we do need to take care of certain things where he's not allowed anything sweet at this point of time his diet needs to be absolutely optimum and then he needs to run the entry entire battery of this after 10 to

20:36 15 days where he needs to repeat his 2d echo and his blood test so we do need to have a fair sense of vigilance to be honest there is no now there is out of any kind of danger but the recovery process needs to be monitored so you can't just completely take that for granted right um i i just cannot even fathom what you have been through how are you doing it i feel my heart goes out and if i'm thinking um

21:05 how he's battled it all and he's really come out as a winner um how are you keeping him busy i mean how is school taken to it because a large part of the parents would also think that you know what will his friends say or this you know at this this age the peer pressure is also a lot so how did you manage that you know i mean i think that we could sail through this muncie because we got

21:30 so much support and such an outpouring of love i would say and i say love i i say this with a lot of emphasis from his teachers from his school from the children from the parents of the children who have been consistently messaging me sending me food sending me sending him books sending him board games they don't need to do it you know sometimes just a hollow how are you is fine

22:01 but his school of course is in bombay international and the entire school lives on the philosophy of you know empathy and of you know love and just embracing somebody who's it who's in difficulty and inclusion and i think i saw it in the most optimum way and i consider nivan to be very privileged because each and every student in his class or his friends have only reached out to him in the kindest way that they could and there has been

22:30 no judgment they've reached out saying does he need notes you know they don't mind doing video calls to take him through his studies there are there are kids who've done projects for him you know and said listen you don't need to worry we'll do it for you and just add in your name to me i think that's the ultimate lesson and values and you know academics is important but i think if you can teach your children those kind of values

22:56 then i think it's you know so i have been very lucky with the kind of circle of support i have got from everyone and the school majorly actually you know right oh i'm sorry i'm just i i just can't uh i just be i i think i maybe feel like 10 or what you've gone through but uh you've been through a really really tough time and really i um i i don't know what else to ask you but just to

23:26 thank you for sharing your story thank you and uh really i'm sure that with with your sort of optimism i'm sure he's he's going to be absolutely fine and you're absolutely right yeah we have a lot of privilege i'm so glad that um you know for times when you ask by um why nivan i just hope that the answer could be that maybe because your husband and you were stronger to deal and take care of him

23:56 um maybe that's why no it's also probably he he had it in his destiny to help someone right i think i think it's amazing if you can go through a life-changing experience and create some even a minute difference i think i i feel that he's lucky if he got an opportunity to do that in his in his life and we got an opportunity as parents to you know create that sense of awareness then i think everything was

24:28 worth it