After my amnio came back fine I thought I could finally relax about this pregnancy. Unfortunately, at a follow-up 21 week u/s the radiologist came in and told us our baby has a serious left-side heart defect and we need to consult a pedictric cardiologist and discuss surgery at birth.
It was a horrible shock. I feel we are in an alternative universe and no-one really gets how this feels.
I have read a lot about HLHS and am feeling terrified but kind of okay about our odds with that diagnosis. Then the PC (whom we will see this Friday) called after reviewing the tapes and said that the HLHS is "not presenting typically" because "there is more left heart than they would expect" but "he can't see the arch properly" etc etc. To cut a long story short he postposed our appointment until this Friday when the best Echo technician will join him to run another study and see what is really going on.
I am just dreading a WORSE prognosis. All these terms I had never heard until last week are rushing through my mind "diGeorge syndrome", "aortic stenosis", "interupted aortal arch". Nothing sounds good.
The only bright moment has been getting in touch with a heart-kids family support group which met on Sunday. I met many families who have survived this and 2 whose kids have had the first two open-heart surgeries of the HLHS three-stage procedure. They were among the sickest kids and had most feeding problems but their parents said they should improve a lot after the Fontan is done in the next year.
Sorry this is so long. I just feel completely overwhelmed with information but have had this awful wait to find out any more about our little boy and it feels good to blurt it all out.
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