HLHS surgery - biggest decision of our lives

Hypo-plastic Left Heart Syndrome - a complicated term when you hear about it for the first time and means nothing to you. When Krisha was diagnosed with it, I actually wrote it down to be able to repeat it later. Today these four words are so familiar, bitter truth of our lives and have taken the most precious gift away from us.

What are the odds of your first baby being diagnosed with a rare heart defect that affects 4 in 10000 babies - for which there is no clear cause or explanation, a condition that is 100% fatal unless surgically treated. For HLHS cases there are three options for parents: termination of pregnancy if detected in-utero, compassionate care which means doing nothing and taking the baby home and third to go in for a three stage surgery treatment. 


The surgery option is not at all as simple as it sounds. The treatment has just been there for the last 30 odd years and is not a cure. The three surgeries done at birth, 6 months and 2-3 years offer their own set of challenges at every stage. Children with HLHS are on medication throughout their lives. The lack of oxygen in the blood can lead to neurological and developmental issues and added to that are the side effects of having an open heart surgery at such a young age. So in all it is a non stop barrage of challenges and fears.

All this information scared me ... scared me a lot. Instinctively of course you want to do the right thing and give your child the best chance at life. But then there is the big question of the quality of life for the child. How do you decide what is acceptable? If we decided to go ahead with the surgeries we had to be prepared for whatever happened and there was no looking back. I had another baby to look after whose care should also not suffer. At the same time I was petrified about how our lives wold pan out raising her and if we were doing right by her if she was not able to lead an independent, healthy active life. What kind of life would she have, would she be able to look after herself if we were not there, would she get married, would she go to normal school, be able to do all the activities that children did? All these questions were running through my mind over and over, however no answers followed. As the head of NICU pointed out after Krishas birth, a major concern of parents of children with special needs, if she was one, is on how they are perceived socially. The mental make up is still not as mature in Asia as compared to USA or Europe. We just wanted to ensure that whetver we decided was for Krishas good. 


On the other hand if we did not go in for surgery  wouldn't we be unfair in not even giving her a chance at life? Who were we to decide what life was worth living? Deepak has always been the more structured and logical  thinker between us. If the doctor assessed that her case was operable and surgery was an option for her, we would do whatever was in our power to support her in that.  Rest whatever happened would be her destiny and ours. As I read somewhere recently "Never give up on something that you can't go a day without thinking about." 

When Krisha was born she looked so healthy and normal that nobody could make out she was suffering from a fatal condition. HLHS babies are fine in the mothers womb but as soon as they are born the clock starts ticking. Krisha was breathing totally on her own and her right ventricle was quite strong, making her ready for surgery, the final decision was ours. I remember having such a sinking feeling in my stomach for the one and a half days immediately after the delivery. We were shutting between the nursery where Kaira was and NICU where Krisha was with a clock ticking on our heads. The surgeon gave us a deadling on the second day that if surgery was to be done there was no time to loose. Being a twin, even though she was full term Krisha weighed 2.24 kgs which made the surgery quite delicate.

After consulting with the consultant at the NICU, the surgeon, Head of Pediatric Cardiology, our immediate family, we decided to go ahead with the surgery. Once this was done and communicated to the Doctors it was as if a weight was lifted off our shoulders. There was anxiety about what was to come but I felt that we had the strength to face whatever was destined for us. 


Looking back now I am so happy about the decision we made. I don't think having been through everything I am still in any position to advise or judge the decision of others but I do know whatever we decided seems so right and I would do it all over again. I know that things did not turn out the way we would have liked but having been with Krisha for whatever time we had and at least giving her the opportunity to make a life for herself seems right. 


I do feel for all the pain she went through and seeing her in the hospital there were times when I questioned myself if we had been fair to put her through it. However once she was home it was all forgotten by all  of us and the joy and happiness of being with each other dimmed the suffering. She really seemed to flourish being with her family. In the long run it would surely have been worth it. Maybe God had meant for her to come to us for this much time for a purpose .. maybe we will understand some day.