The timing of Mary getting pregnant second time around was great. We had a dating scan on the 23 December, showing that the Baby was 7 weeks, 6 days old and looking OK – or at least as OK as you can tell at 7 weeks, 6 days.
Christmas came next, and it was great to catch up with the family on the Sunshine Coast.
After we got back to Townsville, I started to think about the neonatal hemochromatosis (NH) again, it was a reasonably scary time. Basically Mary and I had both accepted the odds; we had a 20-25% chance of delivering a healthy baby and the alternative was a child suffering from NH which would almost certainly be fatal.
On 7 January I was surfing the internet to find more information about NH and stumbled across an article by a Dr Whitington associated with NorthwesternUniversity in Chicago. I got pretty excited about things and sent off an email to him. The article was based on a press release discussing a paper published in the Lancet, which is a highly recognised medical journal.
Things just kept getting better (I remember thinking that 2005 was shaping up to be a very good year). Dr Whitington responded to my email within 24 hours, he had apparently received my email while he was in the middle of writing up a grant application for continuing the very study I was asking about. His email included details of his investigations at the time:
We have been engaged for the past 7 years in treating women during gestation to prevent recurrent lethal NH based on the hypothesis that it is an alloimmune disease. The treatment consisted of intravenous immunoglobulin derived from pooled serum of multiple donors (IVIG) administered weekly at a dose of one g/kg body weight from the 18th week until the end of gestation, which has been successfully used to lessen the severity of Rh disease. We have chosen for treatment women whose most recent gestation was affected with proven NH in lieu of any other marker for high risk of recurrence. These studies have been approved by the IRB of Children’s MemorialHospital.
Eighteen women have received gestational treatment. Two women have been treated through two pregnancies each. Twenty one babies have been born (including one set of twins), all of whom have survived with medical therapy or no therapy. No intrauterine growth restriction (IUGR), foetal liver disease or other evidence of foetal distress could be detected in any case. This is in stark contrast to the typical progression of NH, where severe IUGR and oligohydramnios are universal…
So far we are 100% effective in preventing lethal disease.
Obviously we were really encouraged by this information and faxed the email to our doctor at the Townsville Hospital. Simone phoned us back on 12 January and confirmed that the research sounded exciting and that she was looking into it.
Mary was excited, but nervous. The treatment described involves large doses of IVIg once every week and we want to be certain that we’re not putting Mary at any risk. We still have about 6 weeks before the treatment is due to start, which should be plenty of time to sort things out.