Dr R, who was the liver transplant director, told us that the diagnosis was Neonatal Hemochromatosis. The basic information is here. At the time, Dr R was very careful to tell us: our baby did not have hereditary hemochromatosis. This is a very different condition; an iron storage disorder caused by some sort of gene mutation.
In Aidan's case, however, he had received his extra iron, which had destroyed his liver in utero, from his mother. Me. I don't have any medical problems, at least not the kinds that affect me, but when I am pregnant, I transmit way too much iron through the placenta. The present research hypothesizes that this is due to an alloimmune response of my body to that of my fetus. This alloimmune response sometimes does not trigger until later pregnancies. Aidan was my 8th pregnancy, though only six came to term. The others were all essentially health and my pregnancy with Aidan was textbook normal for a grand multipara. I suppose I am way out there in the statistical zone since most mothers do not have that many children, and NH is way rarer even than 8 pregnancies.
Kevin and I were told that Aidan would be put on a heavy-duty chelation cocktail while he awaited transplant. No hope of fixing his liver; just hoping to slow the end stage disease process . The thing with livers is that they process proteins which are the building blocks of growth. Aidan was in a Catch-22 -- he needed to grow in order to have the transplant but you need a somewhat functional liver in order to grow.
The doctors at the university center were honest with us. They told us the statistics -- grim--and that this would be a battle. A marathon, was the exact term. Other parents may feel differently about this, but for us it was refreshing. We didn't want to be patted on the hand. We'd done that at our home hospital and then when reality hits, you are blindsided. We wanted a team who would face reality and commit themselves to doing their utmost for our child, and this was what the team emphasized.
We were also told that any future child would have >80% chance of having the same condition. At that time the only treatment options were the wryly named "chelation cocktail" and eventual transplant.
My present blog title, though I may change it, came from a poem by Robert Browning. I thought it evoked the strength of the disease and Aidan's victory, with a few scars where the iron gate's teeth caught him on the way out. It looks a bit grim up there, though, and I don't want this to be a grim blog, so I may change it.
The other quotes:
Of what use were wings to a man fast bound in chains of iron?
Afflictions are but the shadows of God's wings.
"...to have faith is to have wings."
I put the first one up there as a rhetorical question. The answer is that wings were of great use to Aidan. Wings are of course to be understood figuratively as the immaterial things that bear us up through the worst times. Things like the commitment of a medical team, the prayers and support of friends, the hope and love of relatives, his own courage and joy during his struggle. They were stronger than his "iron chains" (shameless puns here; thanks, Dad!)
But it looked too despairing by itself, so I put up the others.