We’re thrilled to announce the arrival of Cara Grace Jordan.

Born Tuesday 19 August at 10:38, weighing 3140g.
She is a much loved and anticipated addition to our family.

Unfortunately she’s still in the Neonatal Intensive Care Unit, and will be there for at least a few days as the doctors monitor her closely. Her serum ferritin levels were about 10x higher than Harry’s. However, most of the tests that have come back are positive, so we’re hopeful she’ll be ready to come home by the end of the week.

It’s been a very long time since we last posted here. And there’s been a lot happening! The biggest news is that Mary is pregnant again, now about 23 weeks, and everything is going fine. You can see more ultrasound images here.

It’s also been exciting to be in contact once again with Dr Whitington and hear of the more recent progress in the research. See my comments on his recent paper here.

Mary’s going through the treatment again, and it’s running quite a bit smoother compared to last time. Though it’s no walk in the park. While using Intragam makes the infusion go a lot quicker, there’s still a lot of headaches and needles and time spent in hospitals. Also interestingly, for other people with NH experience, Dr Whitington’s protocol has changed somewhat since Mary underwent the treatment with Harry. Instead of starting at 18 weeks, Mary commenced at 14 weeks, and then had the second treatment at 16 weeks, before the weekly treatments started at week 18. This is based on a theory that damage to the foetus could start earlier than previously thought.

Apologies for the long break between posts. We’ll update you on our progress in the not too distant future.

Dr Peter Whitington and Susan Kelly have just had their latest research published in Pediatrics.  I’ve summarised the key points from the abstract below, and if your lucky this link may take you to a pdf version of the complete article.

Whitington P & Kelly S, 2008, “Outcome of Pregnancies at Risk for Neonatal Hemochromatosis Is Improved by Treatment With High-Dose Intravenous Immunoglobulin”, Pediatrics published online May 12, 2008; DOI: 10.1542/peds.2007-3107

In summary the article builds upon his earlier work (see my posts here, here and here) .  The number of women involved in his study has increase to 48 (including Mary!) treated over 53 pregnancies.   The histories of the women demonstrated the high risk of occurrence of neonatal hemochromatosis: 92% of pregnancies ended badly, or in the papers words “resulted in intrauterine fetal demise, neonatal death, or liver failure necessitating transplant”.  “In contrast, with gestational therapy, the 53 at-risk gestations resulted in 3 failures and 52 infants who survived intact with medical therapy alone. When compared on a per-woman or per-infant basis, the outcome of gestation at risk for neonatal hemochromatosis was improved by gestational therapy.

The paper concludes that neonatal hemochromatosis seems to be the result of a gestational alloimmune disease, and occurrence of severe neonatal hemochromatosis in at-risk pregnancies can be significantly reduced by treatment with high-dose intravenous immunoglobulin during gestation.

We hear from people reasonably regularly who have lost children through NH.  We recently heard from about Alice Rowlands  who passed away after 5 days trying to fight the disease.  Miranda has set up a web site in memory of Alice.

It’s terrible and tragic and it reminds us how lucky we are to have Harry and how much we miss Ellen.

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.