Neonatal Hemochromatosis

So, I'm pregnant. Here are the details.

1. I am due March 5 (Calder's birthday is March 8 - the first words out of Hugh's mouth when he heard the date were, "I don't care how much work it is, our kids will NEVER have a joint birthday party." I quickly concurred. I would NEVER want to share my birthday with anyone else!)
2. We will not be finding out the sex of this baby. We loved that the other two were a surprise and are looking forward to this one as well.
3. I felt like crap for the first trimester. I am not a puker - just serious hangover gut. I am feeling WAY better now. This pregnancy, so far, feels EXACTLY like the other two.
4. I will be 14 weeks on Wednesday. 
5. Wednesday is the first day of my treatments.

Last week Kelly Hampton over at Enjoying The Small Things talked about how some things in her life don't show up on her blog, that instead they go into a private folder. The last year and a half I have put numerous things about Tripp in a private folder (I actually do have a folder on my computer labeled Tripp Vincent and in it I put all the things I write about that are too private to post on my blog, so it isn't totally metaphorically speaking!). Most of the things I have put in my private folder have to do with how he died and how we came to determine this. I am not going to pull out all those details to share now, but I will tell you the "Why" part. Because without it #5 won't make any sense at all.

Tripp died of Neonatal Hemochromatosis (NH). It is an Alloimmune Disease. In fact, I think they are changing the name of Neonatal Hemochromatosis to Gestational Alloimmune Liver Disease. I will link as many things as I can in this post in case I don't explain something clearly or in case you want to have a look on your own.

Tripp ultimately died of liver failure which triggered the failure of a number of his organs. His liver failed because it had been severely injured by antibodies in my blood. Essentially what happens in NH is the mother has antibodies that see the fetus' liver cells as bad. Those antibodies then do their job and work away at killing the fetus' liver cells. 

NH is not hereditary. Doctors don't actually know what causes it. What they do know is once a mother has a baby born with NH, there is an 80% - 90% chance that her next child will have it. NH is almost always fatal. Because they don't know a lot about how I got these antibodies, they don't exactly know why there are a few women like me who have had a healthy baby before having a child with NH.

This brings me to #5 - my treatments. A doctor in Chicago named Peter Whitington has done extensive research on NH and because of this has found a treatment that has really good success. 

I will be getting a blood product called IVIG. Essentially the product is antibodies. The theory is that these antibodies will trick my body into not producing any of my own. I will receive this blood product through intravenous and it could take anywhere from 4 - 8 hours each time. I will get this treatment at weeks 14, 16, and 18 through 35. All treatments will be done at the hospital. 

You can read Dr. Whittington's research HERE. This research looks at 53 pregnancies that were treated with IVIG. One woman dropped out of the study after one treatment, two women had babies premature who did not survive. Upon examination of the babies, neither appeared to have any signs of NH. Forty-nine women had babies who "survived intact with medical therapy alone."

All of these children were healthy, "normal" babies at the time the study was published (the children were born from 1997 - 2006 and the study was originally published in 2007). 

This study gave us hope and we were fortunate to have a doctor willing to get Tripp's autopsy to Dr. Whittington. Once Dr. Whitington saw it, he immediately wanted to see the slides from Tripp's autopsy. The slides confirmed diagnosis of NH for Dr. Whitington and quickly passed on the medical protocol for the treatment to my doctor.

Phew. That is a lot for one post. More tomorrow.