Neonatal Hemochromatosis


 

Over 6 years and 100 posts ago we discovered Ellen died of Neonatal Hemochromatosis and we embarked on a journey – with the help of Dr Whitington’s new treatment – to try to have our own family.

It’s taken a long while. There are still lots of days when we catch our breaths meeting or seeing a child about the age Ellen would be. We still miss her a lot, but the ache has gone.

There is so much joy. Ellen gave us the chance to be parents to Harry and Cara and it’s been wonderful. Harry and Cara are both happy and healthy.

The treatment is now being used a lot more widely, there is a lot more information out there, and there are more support networks. In the last month a group has started up at:
http://health.groups.yahoo.com/group/Neonatal_Hemochromatosis
There are already about 40 members and it’s very active. People are sharing their experiences and helping others by doing so. That was always the purpose of this blog. Hopefully, in some small way, we’ve been able to help others by sharing our story.

So we’ve come to the end of the last post on this blog. We’ve no plans to take it down, and feel free to email us if you have any questions or want to leave comments. Thank you so much to the people who’ve contacted us over the years, sharing your experiences and providing your support has been invaluable in our journey. We wish you all the best on yours.

Lots of love Trent and Mary

Over the years quite a few people have posted comments asking about whether neonatal hemochromatosis NH is related to hereditary hemochromatosis.  This article by Peter Whitington explains hereditary hemochromatosis and how NH is different.

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.

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.

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