Veer Banerjee - my son, first child, was born on March 31st, 2008 with a Congenital Heart Disease (CHD) - DORV (Double Outlet Right Ventricle) in which both of the great arteries of the heart (the aorta and the pulmonary artery) are connected to the right ventricle instead of separate ventricles, apart from all this he had a VSD ventricular septal defect (VSD), which is a hole in the wall (septum) between the two pumping chambers of the heart, the left and right ventricles along with Pulmonary Stenosis.
With DORV, the VSD actually helps patients because it allows oxygen-rich blood to pass from the left ventricle to the right, where it is pumped into the aorta and to the rest of the body. Circulation of oxygen-rich blood is accomplished with the VSD but only at great stress to the system. In addition, the oxygen levels in the blood are not as high as those found in patients with normal hearts.
It was not diagnosed in my entire term of pregnancy in the USG scans. After his birth the doctors heard some murmurs from his heart for which an ECG was performed which confirmed his DORV.
He was with me for 18 blissful days with no medication - a beautiful, otherwise healthy (he weighed 3.02 k.g when he was born) and happy child. However, from around Day 19th, he started having difficulty in feeding. We conducted another ECG on Day 25 which showed that his VSD was rapidly shrinking. We were told that he had to undergo an immediate open heart surgery where his chances to survive was only 10%, leaving which he would anyways die. On day 26, he was operated for 8 hours and was wheeled in the ICU in a stable condition. However, he started sinking from 2:00 a.m on Day 27. I lost him on April 27th, 2008 early morning at 4:00 a.m. in the hospital.
My each waking moment I just think of the moments I was helpless and as a Mother could not save my baby when he was in pain and just had to watch him die.
His last penetrating / wakeful gaze towards me was around 34 hours before he died. How I wish every day that my Life would take a “U” turn and stop at that moment when he was in my arms in the hospital and looking at me with hopeful eyes and maybe pleading for help.
Experts around in the filed say that this is a very rare disease (no causes known or established) and the chances of my next baby born with this are as high as 10%.
May everyone facing with this have the strength to go on and overcome their grief. I am still fighting and shall continue to do so. Words of advice to all the ladies out there – Please spread and create awareness about CHD / DORV and all pregnant ladies must insist on elaborate fetal heart scans / other abnormality scans so that they are made aware of any defect / disease during the pregnancy itself.
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My Baby, I miss my Veer too, maybe not as much as you do, but in my own way, in my own time, in my own helplessness, in my own sense of responsibility, in my own lack of control...
ReplyDeleteYou know I'd do anything to be able to undo what is.
I am, however, forced now to be humble enough to concede, with grace, that I cannot make everything be what I want it to be.