One in Ten Million

Rachel has been having some more tough days.  Still no spells but she had a really difficult bowel movement yesterday where I had to help excavate it.  (I have never seen a bigger bm from her - so it was a bit nervewracking for me) We have also noticed that she is sleeping more but waking often to sip a bit of milk (maybe 5 ml) and trying to sleep again.  Sometimes, every 15 -30 minutes during the day.  Our respite worker told me that she was up every hour last night doing the same.    


Dave and I were able to go on a date on Monday night - thanks to some very wonderful friends.  They even took all three and we used a Tony Roma's gift certificate from other friends.  It was so very amazing to be just the two of us in a restaurant - with no demands, no interruptions....That heavenly evening seems so very far away now....but it does give us a glimpse of the REST that is coming for us. 


Some interesting Medical information:
Awhile ago I was contacted by a mom in the States who has a little boy, about Rachel's age, with many of the same anatomy issues.  The one main difference is that Rachel's pulmonary arteries are connected to her aorta, not the heart.  This makes her case extremely rare.  This mom shared our story with her cardiologist, who specializes in Heterotaxy (what our babes have, in very simple language this means that in the beginning stages of development in utero, the right and left sides were confused) There are two types - right atrial isomerism (what Rachel has) and left atrial isomerism.


In my friend's words, this is what her doctor told her:
"...in the literature this [Rachel's kind of pulmonary arteries] is only 1% of Right Isomerism cases." 
and my friend's thoughts on this:
Right isomerism is like 0.2% of all CHDs [cardiac heart defect]
....so to have something that is 1% of .2% has got to be (I am bad at math) but it has to be like 1 in 10 million or something." 
I checked later - he he - the math is wrong but it still is amazing.  It is still safe to say that Rachel is one very special little girl.

This Cardiologist also said that 99% of the time when they do a shunt on these babies (a common procedure to open up the pulmonary veins and often a crucial step that needs to happen before a heart transplant), they die - confirming yet again to us what all the Heart specialists/surgeons have said about surgery.  And in fact, even if this procedure would work, it would only be temporary given the nature of her arteries.  She is not a candidate for a heart transplant for multiple reasons.  So if any of you are still wondering out there why we are not doing surgery - please don't wonder anymore.  We ourselves have crossed that bridge of wondering long, long ago. 


So often I marvel at how fortunate we are to be born in this country - and all the medical help that is available to us.  I think that having Rachel will deepen our compassion even more, for the parents whose babies die in our world.  So many children are dying - not just because they don't have access to surgeons but because of simple treatable diseases.   I am incredibly fortunate to live here and have access to world class facilities - and a government that provides respite for us at home and a Hospice where we can go to rest.  My child will not die because I did not have the money to pay a doctor - or because I was unable to feed them proper food, but many children in our world do - and my heart breaks because of the contrast between our world and theirs.


Several months ago, I spoke to Compassion Canada about having forms at Rachel's funeral - for people who wanted to give something in honor of Rachel.  It seemed extremely fitting to honor her life in this way.  We have the forms now already so if anyone wants one, please feel free to ask me for one.  I would love to know if you decide to honor Rachel's life by giving a gift of love to hurting children - either to this organization - or another one.  Here's a link to the fund that we have chosen.  You'll find some stories there too, of how this fund changes kids lives and brings Hope to their communities.


Medical Health Response Fund

Front of the Card
Isn't she cute?