Jash Fighting With A Birth Defect

October 21, 2016

We all were so excited to hear crying noise of a newborn baby at KANAN MATERNITY AND NURSING HOME, Usmanpura. It was c-section, so there was mix feeling of excitement and fear!

Me and Wife

All of a sudden, nurse came out with a smiling face from OT (Operation Theater) and put a small baby over my arms. I literally cried at that moment and that was one of the best feeling, can’t be explained in words :)

It was the auspicious day of the Rakhi (August 18, 2016), we blessed with a baby boy. A true blessing for me, my wife Kinjal and the whole family.

Everything was smooth, happy and exciting!

As a part of a regular process, all the nursing home called external pediatric expert to check whether a baby is normal or not. The same happened in my case too. The pediatrician was Dr. Rajesh K. Parikh from MATRUCHHAYA CHILDREN HOSPITAL & SURGICAL NURSING HOME. As parents, we usually put our trust if someone recommended by the main doctor and we did the same. We decided to continue with the same pediatrician suggested by Dr. Kanan Vyas (who operated the delivery of my wife).

Post delivery, Dr. Parikh checked my baby and said that everything is normal and nothing to worry about. But I and my mother-in-law observed blackish lips of a baby at the same time while Dr. Parikh was observing the child for the very first time. But he said the color tone of a baby is little darker and baby’s hemoglobin is stronger enough to get that darkness. We also noticed that baby become even darker while crying and show our concern to Dr. Parikh after a week, while visited his clinic for the 1st vaccination round. But he answered stereotype. So we thought that might be the only reason. And a baby is perfectly well.

After 1.5 months, we had an appointment for the 2nd vaccination round. Even though we took an appointment and waiting for approx 2 hours in a heavy crowded room with a month little baby of just 1.5 months, instead of giving priority to us (or other parents), Mr. Parikh called MR (Marketing Representative) in his cabin for a discussion. My wife and mother-in-law requested few times at the reception to give priority to us as our baby was crying. But instead of asking doctor, receptionist ask us to check with other patients (that was really weird feeling, I mean why should we beg to the people!! anyways…), but nothing happened and finally, mother-in-law decided to leave from there and consult with another pediatrician who respects parents and their time.

On the next day, we took an appointment with Dr. Malav shah and Dr.Kiran shah. On the very first sitting of a vaccination, they observed crying baby with dark body tone and told us to wait until a baby is quiet enough for vaccination. Meanwhile, they kept asking few relevant questions and we answered.

After thorough observation, he suggested us to do a quick echo report just to confirm why baby become so blackish while crying and with no time we left for echo test to Dr. Vishal Chngela (pediatric cardiologist) and unfortunately the report was positive.

My son found with a major heart defect which is called d-TGA (dextro-Transposition of the Great Arteries - https://en.m.wikipedia.org/wiki/Dextro-Transposition_of_the_great_arteries).

https://en.m.wikipedia.org/wiki/File:D-tga-575px.jpg

He was just 1.5 months old and we have never noticed anything wrong except the darker color body tone of lips and the face while crying. It was something shocking for us as none of the family side we have major heart diseases to anyone.

Dr. Changela told that such a defect identified during 4d anatomy scan in most of cases. I also googled a bit and found, this can be identified during 18th-week anatomy scan but in our case, unfortunately, it couldn’t. We can say that this is because of the improper attitude of doctors who did scan and generated reports, Dr. Rajesh who didn’t suggest even an echo report just to confirm, and Dr. Kanan Vyas who noticed less oxygen after delivery but yet not suggested to do a report.

As suggested by Dr. Changela and Malav, we took a quick step to admit our 1.5 months old baby to the hospital, U. N. Mehta in the emergency ward.

My son Jash was in the hospital from 6th October 2016 to 8th November 2016. He has been operated with a minor lung surgery on 9th October 2016 and major open heart surgery on 12th October 2016. All these happened within a week time period.

On October 19, 2016, we came to know his condition is critical as he caught by infection SEPSIS (or SEPTICEMIA) is kind of a blood infection which is a serious medical condition.

Read more about Sepsis infection: http://www.m.webmd.com/a-to-z-guides/sepsis-septicemia-blood-infection

October 25, 2016 - Due to infection, his BP is constantly low down and we had to inject blood platelets too. But till the date, there is no improvement. We have to wait and watch.

October 28, 2016 (Friday) Today we came to know that Jash’s condition is the worst and we need a Single Platelet Donor (SPD).

I am so thankful to people in my current company (CIGNEX Datamatics) where HR and all are so good as a helping hand to find such a donor. Heartly appreciate the warm behavior from the company.

I would not forget to mention the whole UI team including…

  • Tapan Chitroda and Family
  • Manish Sharma (who infect was an SPD)

November 2, 2016 (Wednesday) Finally, Jash’s condition is well and infection report is now so negative. We took a breath of relief… And on the next day, he had been moved from pediatric ICU to the physiotherapist ward.

And here the day comes:

Thanks for reading and supporting.