Weighing our options

When we first heard about HLHS from the doctors, we were not given much hope and there did not seem to be much we could do to save my baby. Being pregnant with twins, any intervention or further investigation would put my other baby at risk so I would continue with my pregnancy as usual.

We started researching online and got to know about the 3 step surgeries, although it was evident that the treatment had only existed for the last 30-35 odd years and was extremely high risk. Still we were surprised that it was not discussed with us an option at the hospital. Singapore is a small country but is a medical hub in the region and known for its high level of medical facilities.

The maximum experience for treating the condition was in USA so we contacted some of my relatives in the medical profession for information and advice. The prognosis was that it is definitely a high risk condition but going ahead with the stage 1 surgery was fairly common there.

Going to the US seemed a bit complicated as I would have to travel a few months before delivery and stay for don't know how long, if we went ahead with the surgery. Also my gynecologist had termed my pregnancy as high risk due to the twins and had advised against any travel, so we were a bit vary of going against that. We then tried to gather some more information for our options in Singapore. Needless to say it was very limited. After making calls to some of the leading hospitals we finally got to know of one of the leading cardiothoracic surgeons and apparently the only person who had the experience and capability of performing such a surgery.

Meeting up with him, the facts of the condition remained the same that there was nothing we could do till the delivery. He stressed on the fact that my main focus should be to stay happy and not think too much or be disturbed, as this could have an adverse effect on my pregnancy. It was extremely important that i take my pregnancy full term and take care of myself. When i delivered we would keep him informed and we would make our decision then, based on the health and condition of the baby at birth.

In the meantime we started reading up on HLHS and various blogs of other families. We tried to learn as much as we could so that we were prepared and well informed to ba able to make sound decisions. It was heart breaking to read and see small babies going through so much and I ended up spending many days crying for them and my own baby too.

Finding Out

As is the case with many HLHS cases, we found out about Krisha having a hypoplastic left heart in the 20 week ultrasound scan. Knowing that we were having twins was the happiest day of my life, second I guess to the day I got to know I was pregnant. 10th December 2009, the day we had the scan would definitely count as the toughest.

The day started off on an optimistic note as we went for the all important 20 week ultrasound scan and as usual I was quite excited to see the babies and determine the sex. Well the scan was almost complete but both the babies turned over and the technician was unable to see the nose of the lower twin and the heart of the upper twin. She asked me to move to another room so they could try again. However now that I think back to the turn of events of the day I have my doubts that she did find something amiss and just wanted a second opinion before giving us the bad news.

Anyway we tried again after a few minutes and the lower twin was given a clean chit. The upper twin had still not turned so they asked me to go for a walk and grab a bite by when she would hopefully have shifted position. Deepak was getting late for a meeting so I told him to go ahead since only the heart was left to be seen and of course there was no doubt in my mind that it would be perfect.

Getting on the scanning table for the third time that day finally the technician was able to see the baby’s heart. After some time I got a sense that she was spending more time than usual and I remember unconsciously crossing my fingers and hoping that all was ok. The lady seemed to be very focussed on the scan and responded very curtly to my usually light hearted banter about what we were seeing on the screen. Finally she informed me that there was some problem with the baby’s heart which the doctor would talk to me about.

Leaving the scanning room, I remember holding back tears and telling myself that it could not be something so severe and I would wait to talk to the doctor before assuming anything. Didn’t even call DK at that stage so as not to panic him without reason. I was filled with a feeling of dread and a heavy heart but trying to hold it all back. Within a couple of minutes of seeing the doctor it was confirmed that it was HLHS, obviously not something I had heard of. She suggested that we meet the paediatric cardiologist who would give more details on the condition. I called DK to come back urgently as there was a problem with the baby’s heart. We met the pediatric cardiologist and he did another scan confirming the diagnosis. The left side of the baby’s heart had not developed and was a quarter of the size it should be. This would affect the ability of the heart to pump blood to the body, so although the baby would probably be fine as long as she is in the womb, the moment she came out she would not be able to sustain herself for long. He gave his caveats of course of how the scans were 80% accurate and the real situation would disclose only at the time of birth, I discounted all that mentally just registering that the baby would surely not make it.

Medical science has made so much progress, surely nothing was beyond treatment these days ! So WHY ME and WHY MY BABY? This is something I had been wanting for so long and thought God had made us wait and test us to give us the biggest joy of having two babies at one go! Is there something I did or didn’t do or something I could do in the future to salvage the situation still? Unfortunately no, there is only so much in our hands, rest is still unexplained and up to God and nature.

Hence started our roller coaster journey with HLHS.