update on Baby Camilla

The following is an email update from baby Camilla's father. Please continue to keep her and her family in your thoughts and prayers.


Hi. I wanted to give you all a quick update on our daughter, Camilla.

After 20 long days in the NICU at Northwestern Memorial Hospital she came home. But only for 7 days. Then she was rushed to the ER at Children's Memorial Hospital after suddenly being lethargic and having a low temperature. Now she is in the NICU and has been there for 10 days.

She had about 100+ different blood, urine, spinal fluid tests. We finally have a diagnosis. She has a very rare liver disease called Neonatal Hemochromatosis (NH). Google it. It is very scary.

Essentially it means her liver is not dealing with iron the the way it is supposed to and thus could be fatal (deep breath). Currently, her liver is not operating properly and her blood's clotting factors are not normal. Therefore, bleeding has become a major concern even at her IV sites. Her liver function is about 1%.

Camilla is a very sick baby and the test result numbers say one thing, but to us she is looking better considering everything else that could be wrong -- she has not gotten worse, she just started feeding by bottle again, she is pooping/peeing, her weight is somewhat stable, she is alert more than when she was day 2, she is maintaining temperature somewhat, and hopefully this liver of hers already took the beating and is trying to recover.

So now what? There is a lot of "one day at a time" and/or "wait and see." But the really good news is that the only doctor who is doing effective treatments (though only small studies) for NH is Children's Memorial Hospital's Dr. Peter Whitington. We met with him. The one treatment that has been shown to be effective in a very small study Camilla received one week ago. The damage to her liver is done. All this treatment does is stop the damage to her liver from continuing.

From there the remaining healthy cells in her liver need to recruit other cells and start the rebuilding process. And this takes a long time. If she does not get better oftentimes liver transplantation is the answer but that comes with a plethora of challenges as you can imagine (she is small, liver donor has to be a child, lots of drugs, high bleed procedure, infection, etc.). But. We are hoping this Guru Doctor and the treatment they identified is going to work.

Another piece of good news is that the liver is one of our organs that can rejuvenate itself, but again, it has a lot of work to do.

One more piece of good news. Our son. Theodore. Teddy. T-Bone. He is doing great. No NH for him... thank goodness or else I would be in a mental institution. Mom is hanging in there, barely. I'm staying positive as much as possible. Our families have been a big help during this incredibly difficult time.

This really makes us appreciate how precious life really is.

Often people want to know what they can do to help. I don't know how to offer suggestions on that one. So just say a prayer to your god, think positive thoughts, and send your love to Camilla who needs all the help she can get.