Communication

Dear readers,

I have recently discovered that whatever replies I had posted on comments have not been getting published at all!!

I am so sorry to all of you who have been expecting my replies and not seeing them on the blog. While I try to fix that, can you please write to me on: neelum@gmail.com

This is my reply to the latest comment from Sonali Shah. I have been trying to post it on the blog, but not successful till now.

Hi Sonali,

Dr. Dalvi is in Mumbai. I don't know of your location so I can't comment further. How was your experience in Narayana Hrudalaya? Who did you meet there? What is the treatment plan for your daughter?

Meanwhile, trust God, stay strong. I will keep your daughter and your entire family in my prayers. She will be completely healthy very soon.

Warm regards,
Neelum

13th August 2008 @ Narayana Hrudayalaya

In the morning, we stayed at the guest house, tried to relax.

It was afternoon when we went to Narayana, we already had a room booked for Aadi. After we went to our room, the sister on duty came and took Aadi's details, and we weighed him. Next we were told about the tests that needed to be done.

We did the 2-D Echo cardiogram again, this time with the surgeons team there to analyse and decide what treatment was best. A lady doctor from amongst them explained it all to me and told me how 'Device-closure' was not a good option for him, and that 'Surgical closure' via an 'Open Heart Surgery' was best option.

After this test we went back to our room.

We were sharing our room with another family. They were from the Baluch province of Pakistan. After exchanging pleasantries with them, we found that they were there to treat their 9 year old son, who had had a previous heart surgery and this second one was the major one. Where 3 corrections were going to be made to his heart.

All through the floor where we were living, I saw families from Nigeria, Kenya, Bangladesh, Mauritius, Iran etc.

Even from within India, people were from far flung places like Assam, Uttar Pradesh, Rajasthan, Kashmir etc.

We were told that Aadi's surgery would be in the first session of the morning meaning the early morning time, and that we will have to be prepared by 6 AM.

During the evening a Doctor came and explained the 'Consent Form' to me, and I signed it after going through it. Another Doctor came and we went through Aadi's health records once more, and he asked me for all minute details of his previous illnesses.

At night I was given a brown-yellow liquid, to bathe Aadi. This was in preparation for the surgery. I was asked to remove all his jewellery.

I conjured up all my courage to bathe him. He of course did not understand why he was bathing at night and that too with a soap that was not his !! I remember he asked me for his own 'Green soap'; his Mothercare liquid soap.

12th August 2008 @ Narayana Hrudayalaya

Our entire treatment at Narayana was possible only with the tireless, selfless and prompt help and guidance of Mr. Alphonse, who is the personal assistant of Dr. Colin John.

He had asked us to come early around 8 AM to the hospital. Upon reaching there we did the initial admission procedure, which had a nominal fees, and I must tell you how the staff at the counters was patient, efficient and helped and guided everyone.

We waited to meet Dr. John, who was in surgery; Mr. Alphonse, took us and some other parents with children to meet Dr. John. Once our turn came, we all entered the room (looked like a conference room with a video screen etc) and Dr. John was there dressed in his green scrubs. He greeted each one of us warmly, asked us what we did, where we were from etc; made us comfortable and only then asked us what was the problem with Aaditya. We told him and also mentioned that Dr. Bharat Dalvi from Mumbai had recommended us to him. Dr. John said that Dr. Dalvi was a dear friend of his and he trusted his diagnosis completely. He asked Mr. Alphonse to check his diary so that we could decide the day of the surgery. 14th August was chosen as the day. Dr. John comforted us saying that ' it is in Gods' hands'....He asked us not to worry and shook our hands and did a polite 'Namaste' to my mum. He even had lollipops for Aadi !!

After meeting Dr. John, I knew I had made the right decision of coming to Bangalore, for I was instantly able to place all my trust in him.

The rest of the day, we spent in doing the hospital procedures for the proper admission for surgery.

We were also asked to meet a Pediatric Doctor who asked us all the details about Aadi, right from his birth. I had made a note of all his Vaccination dates, his health related issues like his febrile seizures, I also mentioned the medications which he took to reduce fever in case of a febrile seizure. This doctor was also a very good one, who assured us that Aadi would be just fine in a few days after the surgery, he would lead a normal life, study, play, work, join the army, go to the Olympics, have a family of his own. Basically he tried to tell us that after the surgery Aadi can do what ever he wishes to do.

We also did tests like: a chest x-ray, 2-D Echo Cardiogram, Blood tests to confirm blood type and also for other critical data, and an ECG.

All this process nearly took the entire day, and we went back to the guest house. We did not want to immediately start living in the hospital. We decided to go there on 13th in the afternoon.

Deciding where to go....

Once we had all the facts in front of us. We decided to explore each option.

First thing that I did after meeting Dr. Dalvi was to call Amol and tell him all the details. He was naturally shocked and we decided to do what was best for our little angel. I had also not mentioned anything to my in-laws yet; they live in Pune and so Aadi and I went to Pune to meet them and also explore some possibilities there. My FIL has undergone a Heart Surgery some time back so I thought I could meet his Doctor. On the sirst night that I was there, I told them why I was there and what we needed to do. The very next morning my FIL booked an appointment with his Cardiologist Dr. Srikanthan. Upon meeting him, and explaining to him why we were there, he examined Aadi very carefully, asked all the questions, and then studied his reports. Dr. Srikanthan opined that we need to get him operated soon, there was no point in waiting, he said.

He suggested we meet Dr. Ranjit Jagtap, a renowed surgeon in Pune, and upon enquiring about any of his friends in Mumbai he suggested Dr. Suresh Joshi at Wockhardt.

Dr. Srikanthan was so nice, he even called Dr. Jagtap in our presence and we fixed up an appointment with him for the very next day.

Next morning at Dr. Jagtap's office, I noticed all the awards, and appreciation letters he had received. I was very impressed; and for a man of those credentials and awards; he is completely down to earth and gives you all the time you need. He boosted my confidence when he told me that correcting an ASD was the simplest of heart surgeries. He told us of the various hospitals in Pune where he could operate. he even told us the approximate cost at each hospital.

I left his office feeling a bit better.

Once we were back home; we discussed about all the information we had so far. I must tell you all about the superb guidance that we received at every step from Amol's close friend Laxminarayanan; who himself is a Doctor, and was then with the CardioVascular Innovation Institute in the USA. We were constantly in touch through email, and he gave us feedback about every Doctor, every Hospital.

After doing my research in Pune, I headed back to Mumbai to check out the Wockhardt Hospital and meet Dr. Suresh Joshi.

We were living in Vile Parle, and Wockhardt (Where Dr. Joshi, and also the Pediatric & Congenital Heart Center is) is located at the Mulund-Goregaon Link road which is quite far from where we live. We had read up information about Dr. Joshi and Wockhardt has a good reputation too. So off we went to meet Dr. Joshi and I knew when I saw Dr. Joshi that I could trust him with my son. He is a complete mix of calm, intellect, patience, confidence...everything that one seeks in a Doctor. We got all the information from him, the cost part, the operative procedure etc.

I have to mention here about the operative procedure that he told us about. Dr. Joshi has developed a non-invasive way of doing the same Open Heart Surgery by making an incision under the rib cage. Through this incision, the instruments etc are used to carry out the procedure. This is more suited to children as it is less traumatic than an Open Heart one. He had done over 500 procedures with this new method and the results were excellent.

Now we had more information with us, and we discussed it with Laxminarayanan and we all concluded that we will go to Narayana Hrudalaya in Bangalore. Why I decided against the other hospitals and why I chose Narayana Hrudalaya - the reasons I am putting them down here. Please bear in mind these are my own views, my deductions based on my experiences only. I don't want any reader to hassle any of the Doctors that I have mentioned above.

Dr. Ranjit Jagtap.

• He is a general Cardiac surgeon. Not a pure Pediatric Cardiac Surgeon; that I was looking for.

Wockhardt, Mulund, Mumbai

• The hospital was way too far from my home, and we would need 2 vehicles to service us and make it smooth for us. One to fetch people or any items from home, another one at our disposal at the hospital so that we could use it as and when required.
• I much preferred my son going through this operation the old-school way that is the Open Heart Surgery. I was not too confident on the new method.

Why we finalised Narayana Hrudalaya

• We sent them Aadi's medical reports by email, we got an instant reply from them, giving us the outline of what the best treatment for him would be. They told us all the things that we needed to do once we were there.
• All of us, my family, my in-laws and me & Aadi could easily travel to Bangalore, and live in the guest houses that are around Narayana.
• Bangalore as a city is well known to us, so we were not going to a completely unknown place.
• We had an excellent support system of friends in the city.
• Narayana Hrudalaya has a team of Pediatric Cardiologists and an excellent post-operative care system.

All plans were made to go to Bangalore.

Mom, Papa and my FIL went first by train; they left on the 10th of August.

My brother, myself and Aadi flew in the 11th evening. We all met at the Guest House near the Hospital.

On the 12th was our appointment to meed Dr. Colin John, the surgeon who we wished should operate on Aadi.

Dr. Bharat Dalvi's clinic

After the heartwrenching situation that we faced at Dr. Ratnaparkhi's clinic, I must say I was much more calm and pulled together when the day dawned of our appointment at Dr. Bharat Dalvi's clinic located at Matunga.

The clinic is part of the Glenmark Cardiac Centre. The place is divided into a children's section located at the back of the building and the senior section is in the front. I have visited only the children's section where Dr. Dalvi sits. The place is well divided into a reception area, the 2-d Echo room, Dr. Dalvi's cabin, the ECG room also used for taking the weight and height. There are 2-3 more rooms inside.

Once we were there, we notified the reception staff that we had arrived and we were asked to seat ourselves. There were lots of other people with tiny tots, some mere babies in their mother's arms.

The staff was taking each child in for the height-weight, some were given the pacifying medication so as to not cause any disturbance during the scan. I was asked if my son needed the medication and I declined.

Once our turn came, I took Aadi to the ECG room, they noted his height, weight and then took the ECG. Aadi was very curious as the ECG probes had little balloons on them..thankfully he let it get done easily, and I must say the toys at the clinic and the super sweet staff make it all the more easier.

We waited for some time before we were called in for the 2-D Echo; there were toys in this room too. The staff put a probe to Aadi's toe and measured the Oxygen saturation level in his body.

Dr. Dalvi walked in and I saw a calm looking person, with a easy attitude who put me and Aadi at ease and got about his job. He did his job and asked me to see him in his cabin.

In the scan room, only me and Aadi were allowed. When we were told to see the doctor in his room, we all went to talk to him. We knew the result of the 2-D Echo, and we had our questions ready for him. Dr. Dalvi told us that there is a Septal Defect and that it was a large one; he also stressed that we should get the operation done within 6 months. Dr. Dalvi also operates on children with heart ailments; so were surprised when he recommended hospitals in Bangalore, Delhi and Cochin without saying a word about he himself doing it. So I asked him and he said that due to 3 main reasons

1. The septal defect was a large one 14-16 mm,

2. the distance from the supporting wall was only 0.7 mm,

3. Dr. Dalvi only does the operation using the 'Umbrella Technique'; he does not do open heart surgeries; and Aaditya needed to have an Open heart surgery due to reasons 1 & 2.

Dr. Dalvi also said that if the required surgery was something he could do, he would have said so in the first instance.

Dr. Dalvi is a to-the-point person and means each word he says. I trusted him instantly and in my mind thanked Dr. Daftary who had sent me to him.

His staff gave us a print out of the hospital addresses in the above mentioned cities and also mentioned phone numbers, email ids, doctors' names etc.

He said we were free to choose either of the 3 options as per our convenience. He said that when one is looking at an Open Heart surgery for a child, one needs to look at the entire setup and also most importantly the Pediatric Heart Surgeons and their entire teams so that the actual surgery is done by the best hands and also that the post-operative care is flawless which is crucial in the case of a child undergoing a major surgery.

We were given a detailed report and CD of the 2-D Echo, the ECG. The staff reminded us that we must get a photocopy of the ECG as it tends to fade in a couple of weeks.

We left Dr. Dalvi's clinic feeling more confident and with a clear picture ahead of us.

Now we have to only find out more about each of the hospitals and zero-in on the best one according to us.

At Dr. Ratnaparkhi's Clinic

So after the appointment that Dr. Rao fixed on my behalf with Dr. Ratnaparkhi, we went to his clinic at 5:30 for a 6:00 pm appointment.
Mom and I went with Aadu and my Papa was to join us there directly from his office in Navi Mumbai. My aunt and her son stayed home.
Once we were at the clinic, they asked me for Aadu's particulars, then weighed him and noted his height. As we sat down, a nurse/attendant came and asked me to bring Aadu to a nearby cabin, I went in and there she gave me 4 ml. of a medicine that would make Aadu sleepy, so that we could do the 2-D echo without any disturbance. I gave him the medication, only after making sure with her of any side-effects. There were none.
We waited for almost an hour and still Aadu was not sleepy, infact he had grown restless and wanted to go out and play. It was also raining a lot that evening.
As our turn came, the nurse asked me if we wanted to wait for some more time for the medication to take effect....I said 'no' and assured her that as long as I was with Aadu while the test was being done he would not cause any disturbance.
So...we walked in to the diagnostic cabin, there was a tread-mill there and a bed and the 2-d Echo cardiogram machine stood besides it.
Then entered Dr. Ratnaparkhi, from his adjacent cabin, to me he appeared to be calm and confident (just what I wanted), and after pleasantries he asked me to sit cross-legged on the bed with Aadu on my lap. We did as told, removed Aadu's shirt...and then the doctor smeared some jelly on Aadu's chest...it was cold and Aadu made a face...I comforted him..then he was OK.
Aadu leaned over my knee to watch the proceedings on the monitor...to his little innocent mind it was a computer which showed some pictures !!
The test began...it is just like our routine sonographies that we do during pregnancies...I mean the jelly smearing and the apparatus that they move across our tummy...what is it called....hmmm..well never mind..lets call it a probe.
So basically the doctor smeared jelly on Aadu's chest and moved the probe over it and then the images appeared on his screen....I could make out the outline of his heart, and then the four chambers etc...
Then he switched the view so that we could see red and blue...red for the pure blood and blue for the impure blood being sent to the heart.
During this viewing I noticed that in the upper chamber of the heart the blue and the red were mixing...I knew that was not how it should be...right...we learnt in our school biology that the pure and impure blood stays in separate chambers of the heart...and here in front of me I could see that they were mixing...so I knew something was not correct...what exactly was wrong I did not know...and of course the doctor was going to tell me.
Dr. Ratnaparkhi or his assistant did not say anything at that point and he just asked us to follow him to his cabin.
We followed...and sat down ...his face same...calm and confident...I did not know what to expect.
Then came the moment of his talking....he said there was definitely a problem with Aadu's heart. The wall (septal) separating the upper chambers (atrium) of his heart was not fully formed and thus there was a 14-15 mm hole. This was causing the pure blood from the left to mix with the impure blood in the right side chamber...thus putting a lot of strain on the heart, and the result was weak lungs which had to re-purify some already pure blood which was mixing with the impure blood due to the hole. The technical diagnosis was: Large Atrial Septal Defect. 14-15mm in size. Shunt = left to right.
'Shunt' refers to the movement/flow of the blood in the upper to chambers due to this defect.

By the time this bit of news fell on my ears I crumbled and tears that were confined were let out...I just could not help it...normally I do not cry in front of strangers, but this time I just could not care ...

Thankfully my mother was much more stable than me and discussed the options with the doctor. He said considering that Aadu is not even 3 years we could wait for him to turn 4 and then think of surgery. But surgery was the only option and that the chances of the septal defect rectifying itself naturally was very small.

We left the doctors office with heavy hearts and me crying but trying to look strong coz I was carrying Aadu. Once we stepped out of the doctor's clinic, I stood and cried with Aadu in my arms.....my baby then lifted my face with is hands and said 'mumma....it's OK....me aahey na....me strong boy ahe na...' (which translates to...mumma it's OK...I am there with you...I am a strong boy'....
In that moment, I said to Aadu 'tu theek kar...karshaal na?' (you make it alright....you will won't you?) and he said 'yes mumma....me theek karto na...' (yes mumma I will make it alright)

As we were going down the stairs, my Papa walked up with an umbrella in hand (it had been raining very heavily and he thought we should not get wet while reaching the car). As soon as I saw Papa I cried again, fell in his arms and told him what had happened....he said 'don't worry beta...everything will be alright..'
We rushed in the rain to the car, and headed home in silence.....when we reached home...my brother was home and I told him and Papa everything that the doctor had said and we went through the reports together...
We all sat together and said we will do everything to ensure that Aadu gets the best treatment.
We told each other that we still had to go to Dr. Dalvi's clinic on the 15th so maybe he has a different diagnosis or treatment etc....we were hoping against hope so that our little angel would not have to face surgery...but God had other plans for us all.

9th July 2008

As mentioned in the last post, Aaditya had mild fever running for almost 1 week, so finally I decided to head to Dr. Daftary.
At the clinic, Dr. Atul checked Aadi, then he called over Dr. Daftary to check Aadi, This had never happened before, Dr. Atul had never asked Dr. Daftary to check Aadi ever!!
At that moment I knew something was wrong, but thought that it would be related to the fever.

Then Dr. Atul told me that there were something wrong about his systolic heartbeat, and that we should get it checked by a 2-D Echo Cardiogram.
I had never heard of a 2-D Echo before this, I was very confused.

They gave me numbers to Dr. Bharat Dalvi's clinic in Matunga, telling me that he is the best when it comes to childhood heart ailments.

When I heard that....my head was in a tizzy, I tried my very best to concentrate on what the doctors were saying.

Dr. Daftary said there was no need to be alarmed, we just want to rule out the possibility of a heart ailment hence the 2-D Echo.

I kept that in mind and headed home.

I called Dr. Bharat Dalvi's clinic upon reaching home, and got an appointment only for the 15th of July, and I was not willing to wait till then; because in my mind I thought that we have to just get it checked once and get over with it, so the sooner we check the better.

So the next morning, I went to our family doctor, Dr. Rao in Andheri and he suggested another Cardiologist in Andheri, Dr. Ratnaparkhi. He told me that this cardiologist is well known, and was a good friend oh his. Dr. Rao even called him in my presence and fixed up an appointment for the same evening.

While at Dr. Rao's he checked Aaditya and told me that according to his diagnosis there was no problem, but all rests in God's hands (I remember he pointed to a picture of Lord Ganesha behind him).

By this time, I was tensed and it showed. My mom tried very hard to divert my attention, but the worry just kept eating bits of my heart.

I also remember that while washing some glasses, I actually broke one. Now I am not an overtly superstitious person, but I don't know there was something about that day and when that glass broke I knew I would face some bad news.

In all this time, I had not told my brother about this. I think he was going through a very busy patch at work and hence me and mom decided to keep him out of this, since we had to just get the 2-D echo done to rule out any problem.

This was another mistake I made, because for me my brother is my pillar of strength, my rock solid support. Without him by my side I was just not stable.