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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.


Comments

  1. That is so awesome that you have such great doctors on your side! I will be praying for you guys in the next months and look forward to hearing about your healthy little one when he/she arrives.

    On a side note...a number of people on my dad's side of the family, including my dad, were diagnosed with hemochromatosis years ago. Thankfully it is quite treatable in adults. I had never heard of NH before though.

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  2. I am so glad that you persevered through in your search for the truth. I am also glad that there are solutions. I will be hoping and praying for you through all of this Jordan, and I cannot wait for the day that we can all rejoice and welcome this baby into the world:)

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  3. You are amazing. What a terrifying journey and a lot of energy and work you've already committed and still have to go. Sending you all my love and energy <3

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  4. I will be praying for you during your journey. I'm glad you are feeling better!
    Carey

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  5. Congratulations Jordan!!!!!
    You are very brave and I am sure this journey is as exciting as it is uneasy! You are an inspiration for other people who are scared of having a baby or trying again. Sometimes when Life tries to push you down you just have to get back up again and fight for what you want and that's exactly what you've done! I wish you could go on Oprah and share your journey!! lol! Congrats!!!

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  6. Congratulations Jordan! All the best in your pregnancy. I'll be praying for this little one's safe arrival.

    Leanne Curtin

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  7. Doctor Whittington is amazing. Our daughter had NH and we were blessed to have him intervene just in time. I am glad to hear you are already in contact with him. He is an amazing individual as I am sure you have already discovered. Congratulations on your future arrival!

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  8. What amazing news! Congratulations to both of you. May you be blessed with courage and strength in the next months. I think of you often and am delighted to hear of your pregnancy. Sending you bundles of prayers filled with baby love!

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  9. Whoo hoo! Congratulations on your pregnancy!
    I just have to say, having 3 kids whose b'days are super close together (one was originally due on another's b'day but it didn't happen), don't fear the same or close b'day.
    What works for us is on the child's actual b'day, they get to pick their favourite meal for supper, have a simple cake, have our family & maybe another close family over for supper, and open gifts from family (we ask for no gifts from friends).
    Then, at a later date, we throw a huge party for all 3 kids. This allows us to invite as many friends as we want, and we can also invite all the kids in each family, because really, when siblings are involved, usually all the kids are kind of friends anyway. We have 3 elaborate cakes and just celebrate our friendships and have a super fun day. It is a tonne of work & money, but it ends up being less than 3 separate parties.
    I have done 3 separate parties before and it was WAY more work and not as much fun. Plus, it also took up 3 precious Saturdays.
    One of my mom's friends said her little brother was born on her b'day, and she always loved it. She thought he was a special gift to her. I thought that was such a good attitude. Now, I would never make my kids share a cake or presents (although we do presents very minimally), but if kids can't blow out candles side by side, something is wrong.
    This being said, I know our take on birthdays/gifts is pretty far out there, but I know our friends' kids look forward to a huge annual party from our household, our kids don't complain, and at the end of the day, we can't take on too much so as to overload ourselves and we also want to do things that exemplify the values we want to instill in our children.

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