Not good

Carole & I have just returned from the cardiologist, and we have bad news.

 

Before I go any further, I have to make clear that this is all wrapped in terms such as probable, provisional & likely, so everything that is written here has to be taken with these as read. There are no guarantees that these are the final results, but what is written is their informed opinion, on the basis of the ultrasound scans so far.

 

Essentially, there appear to be several other potentially very serious problems with Caitlins heart, on top of her Hypoplastic left ventricle (abbreviated to HLHS, as its part of the Hypoplastic left heart syndrome ‘family’). Newly detected issues, in ascending order of severity, include:

 

A leaking tricuspid valve in the one chamber that is pumping correctly – this would have been sufficiently serious to have required surgical intervention in an otherwise healthy child. As you can imagine, its a significant complication in Katies case & one that will have to be addressed immediately.

 

There is retrograde flow in her pulmonary veins – this indicates that there is back-pressure within the pulmonary circuit. This is a problem as it means that the operations to treat HLHS require a good blood transit through the pulmonary system; retrograde flow implies that this is impaired, treatment will be significantly more complex and her ultimate blood-oxygenation levels will be worse, as a result. The means that she will thus have a reduced quality of life after surgery.
 

Most crucially, the Foramen ovale (http://en.wikipedia.org/wiki/Foramen_ovale_(heart)) - a construct within the foetal heart that links the two chambers - is apparently either blocked completely, or severely restricted. For the treatment of Hypoplastic left heart syndrome, this has to be kept open, to allow the revised cardiovascular circuit to operate.

 

Points 1 & 2 are serious enough to cause concern, but are not inherently threatening as they form the standard range of 'things that go wrong', in these sorts of cases; point 3, however, is a biggie as it means that she is likely to be born with a variety of complications & may require immediate intubation at birth. The cardiologist was very concerned at the last point, and told us, with obvious reluctance, that it is bad news. She confirmed that there are treatments & they have been successfully performed, but its yet another serious complication on top of the HLHS and that it reduces both her chances of successful treatment & ongoing quality of life.

 

They’re referring us to a hospital at Leiden, for a second opinion, just to check on this, as this is a very rare combination of complications – the obstruction of the Foramen ovale is a magnitude more rare than ‘straight’ HLHS, or even the weird variant that Katie seems to have. In fact, they said that they’d not seen one of these ‘for over 5 years’, so they recommended that we get a second opinion, to enable the doctors to determine the best course of action.

 

We’re pretty bloody awful right now. We still intend to go ahead with the operations, and we're going to have to ask some very penetrating questions to the surgeons, but it doesn't change our immediate plans.

S