December 2006


I came across a quote from Vaclav Havel on “hope”.

Either we have Hope within us or we do not.

It is a dimension of the soul and is not essentially dependent on some particular observation of the world.

Hope is an orientation of the spirit, an orientation of the heart. It transcends the world that is immediately experienced and is anchored somewhere beyond its horizons.

Hope in this deep and powerful sense is not the same as joy that things are going well or willingness to invest in enterprises that are obviously headed for early success, but rather an ability to work for something because it is good, not just because it stands a chance to succeed.

Hope is definitely not the same thing as optimism. It is not the conviction that something will turn out well, but the certainty that something makes sense regardless of how it turns out.

It is Hope, above all, which gives the strength to live and continually try new things.

The part of this quote that first got me in is: hope is not the concept that something will turn out well, but the certainty that something makes sense regardless of how it turns out. As soon as I read this I was taken back to sitting in the intensive care unit watching the machines keeping Mary alive after she sufferred eclampsia following Ellen’s birth in 2003. The optimism and ‘trying to stay positive’ part of that experience for me (as Havel suggests) wasn’t about things turning out right (at the time I’d almost convinced myself that they wouldn’t!). It was more about knowing that I was doing absolutely everything I could to help – whether the outcome was good or bad. Doing that was the only thing that made sense, and the thing that kept me going, giving me the strength to live.

I guess if you were religious you might start substituting ‘hope’ for ‘faith’. There was probably a spiritual aspect to the experience for me – just hard to relate this to a God when there’s so much crap in the world… but that’s another story…

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Here’s some more good news on the treatment of neonatal hemochromatosis (NH).

Over at the Macclesfield Hospital in Cheshire, England, little William celebrated his first birthday back in February this year. William’s parents lost their daughter, Elizabeth, to NH even though she received an emergency liver transplant. Like Mary, William’s mum underwent the IVIg treatment through her doctors at the hospital and with the help of Dr Whitington. William’s now doing fine thanks to the determination of his parents and the success of the treatment. Click here to read the complete article from the Wilmslow Express.

A similarly successful outcome was also published online in the Journal Prenatal Diagnosis last month. Venkat-Raman et al (see link below) report on the successful maternal intravenous immunoglobulin treatment of a woman with a previous history of NH. In this case the woman had two successive previous pregnancies where the babies had died from NH, which causes severe liver damage and excessive iron deposition in other cells in the body. Like Mary’s experience, the woman started the IVIg treatment for her latest pregnancy at week 18 and continued until an elective caesarean section at 38 weeks. The baby boy was born with elevated ferritin levels (the protein associated with iron storage) and some signs of decreased liver and coagulation function. However, all these indicators returned to normal within a couple of months and the child made an “excellent recovery”. It’s interesting that the mother received the same ‘brand’ (Sandoglobulin) of immunoglobulin as Mary and the dosage rates (6% solution at a maximum rate of 150mL/h) were also the same, hence the poor mum would have been receiving the infusion for at least 9h!. We have heard from mums where the rates of infusion are much higher hence the time taken for infusions can be as short as 3-4h.

Venkat-Raman et al concluded that the recurrence risk of NH is high but that the immunoglobulin treatment “appears to alter the course of the disease with better infant survival”.

References

Andrew and Stacey contacted us a while back after they tragically lost their son Teyte to NH.  They have now set up a website (teytesmum.com) that tells their story.  Hopefully Dr Whitington’s treatment may help them have a healthy child in the future.

It’s been just over a year since I moved the blog to WordPress, so I thought it was time for a new (improved?) look. No major news to report but I can provide a few stats on ‘trentandmaryandharry’ over the last 12 months…