I was gearing up to type out my lengthy take on the fenestrate or not fenestrate debate when I came across another blog about CHD issues. Why re-invent the wheel?
So for anyone wanting what I would describe as a very balanced discussion on the pros and cons of fenestration versus non-fenestration have a look here at another parent’s blog .
I feel very strongly that the best approach is to tailor the Fontan to the child. I am not a fan of the blanket approach.
Hypoplastic Left Heart Syndrome is not a label to be applied in a cookie-cutter fashion. By its very nature HLHS is not a ‘disease’, it is like all syndromes a group of symptoms. Some patients have all to varying degrees, others just have a majority.
Often in the books my children bring home from the library we read “everyone has the same heart”. While I totally appreciate the sentiment, this is often confusing for poor old Ted. When it comes to HLHS each precious little heart is different. Special and flawed in a unique way. This is why I appreciate Ted’s surgeon’s plan to asses Ted’s heart in theatre on Wednesday and decide what is best for him in that very moment.
It seems that the surgeon is really the most qualified person to make the decision. Praying for wisdom for him.
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