Neonatal Hemochromatosis

If anyone has ever had a child ill and the doctors just look at you and keep saying "they are a real puzzle", you know what we went through.  The constant uncertainty, and just wishing and hoping for a good word.  We started not really caring "why" our precious baby boy was so sick, but just wanted to make him better.  We never left his side, and my hand never left his fingers or his precious head willing him to keep fighting, to stay with us, so that we could bring him home.  His brothers were so excited for his arrival - for 8 months they had been kissing mommy's tummy and yelling good night to him.  They had helped pick out baby clothes and stack the diapers.  My two year old wasn't so sure what was coming but he understood the concept of a baby.  My five year old had been praying every night for mommy's baby since we had miscarried in the spring of 2009.   And yet throughout my pregnancy I was filled with a sense that something wasn't right, everyone helped me brush that off that this pregnancy was so completely opposite of my first two because it was going to be a girl.  And Ethan wouldn't cooperate for the four ultrasounds that we had, so we were never sure.  Yet, every night as I talked with him and rubbed him through my skin, I prayed that he would be well - I had never felt  that before and told myself it was as a result of the pain from our miscarriage.  The day I went into labor, went so fast it is almost a blur.  The first shock came after two hours in labor they went to break my water and there was no fluid, and there had been no evidence of ferning - that my water had broken previous to labor starting.  Then he was only 4 lbs, 6oz - the same weight he had been estimated to be at the last ultrasound - six weeks before.  Then the NICU staff whisked him away - but not before telling us he wasn't breathing well for a 36.6 week gestation baby, and I could see the looks of concern and confusion on all the doctors faces.  Right before they left the room they brought him to me and I reached out to touch his little hand, said his name, and he looked right into my eyes.  I will never forget that look - there was so much wisdom in that look - I felt the depth of him and knew that he was looking into the depth of me.  What followed was a true roller coaster of information, surgery, and medications.  All the while they were seeking answers and I just wanted to hold my little boy.  Four days before Ethan left us, we were told their working diagnosis was Neonatal Hemochromatosis - which meant nothing to me then, other than that there was nothing they could do for him, and they had never diagnosed a baby with his rare condition before.  We were faced with the reality that Ethan was leaving us, he would never sleep in his cradle, wear his going home outfit, play with his brothers, or crawl into my lap and call me mommy.  The days that followed were spent saying good-bye.  Making sure all of his relatives met him, held him, and kissed him.  We were blessed with one last full day with Ethan before he left us - the nurses left us alone, checking in every once in a while letting us have our final moments with our son alone.  When he breathed his last and left us, there were conflicted feelings of peace knowing he was no longer in pain and the relief of that.  But, also a more intense pain then anything I have ever known.  It was only after he was gone, and the rush of his memorial service and burial was done, that I began searching for answers.  Only to wish that I hadn't, for what I found compounded my pain even more.  Neonatal Hemochromatosis or NH is a disorder that probably happened within Ethan because my blood somehow had contact with the baby's blood whom we had miscarried the year before.  My body formed an anti-body against the fetal liver protein and targeted it in Ethan, essentially taking his life.  The worst of it was that I found out that if we would ever become pregnant again, every other child would have a 95% chance of having NH.  I felt robbed - this wasn't my life choice.  I did not choose to not have any more children.  Then I found through my doctor that there is an experimental treatment, and all trials have been successful, but it is expensive and it feels hard to believe that everything would go right.  Right now the pain is a deep well - not only loosing Ethan, but loosing my hope and dreams for a daughter or another son.  I know that I am blessed, but that doesn't change the question of why has so much of what I desired been ripped from me?