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.
1 comment:
Hi Karishma, my family member's baby has been diagnosed with HLHS. Her husband and her are in Singapore currently to seek for a local doctor's opinion. Could you please share the name of Krisha's doctor as I understand treatment options for HLHS are limited in Singapore? Thank you so much.
Meryana
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