September 2007

Finally got around to updating a few photos on the flickr site. This one was taken this morning as Harry and Mum set off on the 200m walk to Harry’s new day care – he loves it!


We shed a few tears this evening watching Australian Story (an Australian TV program). This week’s episode told the story of Jane and Andrew, a couple who lost a child at 8 months.

A couple of things really struck a chord with Mary and I. The way Andrew talked about “washing the crap away”. Another moment that rang true was Jane’s comment about how many people around her ignored the fact that her wonderful child had lived and died, even though she felt her child, Jackson, was and is always with her.

Jackson died on the day that Ellen was due, and their lovely son Sam, who is now two, was born 5 days before Harry. Some stories hit home harder than others.

You can watch the full episode (titled “War Story”) here.

An Italian team of doctors has now published a paper (abstract here) where they appear to have successfully used exchange transfusions to treat Neonatal Hemochromatosis (“NH”) in a new born. This potentially offers hope to parents who, without any prior warning, find out at birth that their child has NH.

The great progress that Dr Whitington and his team are making with their pregnant mother IVIg treatment has an obvious downside: you have to know there is a possibility the child about to be born will have NH. Anecdotally the odds are around 1 in 100,000. So, given the cost and huge commitment (read about Mary’s experience here), you’re not going to have this treatment unless there’s a good chance the baby will have NH. As it happens there is a good(?!) test – if you’ve previously had a baby with NH there’s an 80% chance that your future children will also suffer the disease. In practice, the tradgedy is that you’ve probably lost a child before the benefits of the IVIg treatment in future pregnancies are available.

We’ve blogged previously about antioxidant and iron chelation therapy (here), and up until now this therapy, along with liver transplantation, were the only treatments available to new borns suffering from NH.  Exchange transfustions involve removing red blood cells or platelets and replacing them with transfused blood product.  It is used as a treatment for other alloimmune diseases in new borns.  It will be interesting to see whether this becomes a more standard and accepted treatment for new borns who present with NH symptoms at birth.