Home Front – Medical Ethics

As I have written in many other posts, I am grateful for my life.  I am grateful for my Mother’s choice to fight for me when I was born seemingly healthy, and later appeared to have birth defects that needed significant attention.  That doesn’t change the fact that I wouldn’t willingly give birth to a child with a high likelihood of health issues.  And, it also doesn’t change the fact that I support parents of disabled children for having the courage to make the hard decisions for themselves and their children.

Now, as originally written about in Pariah II, there has been another generation born into the family with birth defect indicators, cCMV, and it’s now a wait and see period of time as G’s parents work to ensure that the baby has everything she needs to fight the virus she carries, and to have the resources she needs for the best life possible.

I’ve been doing a lot of reading since I learned the news about G, and the part that sticks with me the most is something that’s bringing back memories of my Mother, Betty.  Oh, how I wish she was still with us for her wise counsel in getting through the next five (5) years, minimum, as my #1 Nephew and his wife work to ensure their baby girl is as healthy as she can possibly be.

My Mom gifted me with a phobia about germs.  No kissing on the lips.  No sharing of food or drinks.  Careful attention to sanitation and details when hand washing dishes.  You name it, Mom was on top of it.

Almost to the point where I had my own phobia about shared germs from kissing and such, putting the kibosh on a comfortable sex life in the age of HIV and AIDs until I could come to terms with sharing the simplest of germs with my partner.

Herpes contageon made me crazy with dating and trying to determine the honesty of my potential partners (yes, I was anal enough to demand a “clean” and recent STD test results, or there would be no getting nekkid together).  No way was I dealing with catching anything from a liar.

Seeing all the information about how easy it is to catch CMV, I have to wonder if my Mom was aware of the risks (having raised me, lost a couple of pregnancies to miscarriage, and having lost a younger brother to SIDs).  It’s times like this where I wish the older generation was around to provide guidance to the great grandchildren’s parents about things that have been lost in the mist of time.

There is so much positive information, along with so much scary information, that I have to keep my mind focused on the fact that they can treat much of this with anti-virals today, that she is not wearing a feeding tube in her baby picture, and that my #1 Nephew has said that he’s overwhelmed by the bad news but determined that his daughter will be all that she can be, regardless of whatever happens.  No disease or birth defects will determine her destiny.

Having read all that I have about things the mother coulda / shoulda done to prevent the contraction of CMV in the first place, I can now see why #1 Nephew was so quick to come to his wife’s defense and say that how the baby caught the disease was “water under the bridge”.  Absolutely right, and I never for a moment thought about blame – not just because I didn’t know the baby was here and was ill – but because blame doesn’t change reality.

I absolutely agree with his fighting stance on behalf of his wife and daughter, and I hope that the baby ends up healthy and defect-free.  I have to pray that her hearing and vision and cognitive abilities will not be effected, and that her anti-viral medications work wonders for her during the next five (5) years of her life as they wait and wonder and fight to give this child every opportunity to be everything she chooses to be in life.

As shown in the image above, the statistics look good for early intervention preventing many of the side effects, so now we wait and see what the Docs are concerned about, what impairments present themselves, and whether or not the intensive antiviral protocol helps her fight off the risks of her disease.

Interesting cCMV Blog:

Grace’s Story  of the journey through a cCMV baby’s life

When you look on Insta-gram, there is another little girl, Lilah, all over those pages as her Mom shares her ups and downs.  Ditto for all the other children fighting the effects of cCMV on their lives.  So many happy children, finding options for great quality of life.  I’m hopeful that my #1 Nephew and his wife will be able to field this challenge and find their marriage stronger than ever as they pull together to raise both their children to be all that they can be in this world.