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Micro-Preemies – Blessing or Burden, Part II

About a year ago, my husband, a hospital pharmacist for more than forty years, came home from work with a story that broke my heart. He told me about a baby weighing one and a half pounds whose mother had been replaced by the state of Texas. This tiny mite, a girl no bigger than my thumb, not only had the ordinary obstacles faced by such babies for whom the decision to implement life support had been made for them, but had to go through withdrawal because her 14-year-old mother was addicted to crack cocaine for whom I also feel badly. More than anything else, I wished that child peace for eternity and found myself angry that she was not given what I have since learned is known as comfort care. That is when the infants are given to their mothers, who cuddle them until they quietly pass.

At the time, I made note of the incident and didn’t think much more about it, but within the month, I learned that the little girl had grown a pound, but had run up $860,000 in pharmacy charges for one month, which I found remarkable. But, when she was joined by three others like her, all girls, who were all faced with the same obstacles, I had to question who was making the decision to put these tiny, suffering children through so much pain and at what cost – both financial and emotional.

I had not put together a newspaper article I had read a while before about the mother of a 10-year-old boy who was in a permanent vegetative state and on Medicaid in Texas. The decision had been made by the administrator of the hospital where he languished, to terminate his life support, to which his mother vehemently objected. She went to court, but lost.

Apparently, my husband told me, that is what happened here, but instead of terminating the life support, this hospital administrator decided to implement it. Honestly, I saw red, especially when I learned who is making the decisions, but worse, there is no standard in place for making them by anyone.

When my husband came home with a Pamper so tiny that I still can’t believe was manufactured for a human being, it occurred to me that there is actually a market for this and other micro-preemie merchandise. Frankly, it is overwhelming to me, but then again, I have been blessed with two full-term children. The one I lost, the first, I was not given the choice of whether to save him, which is fine with me. I felt that the only fair decision to everyone, was to realize that I loved him enough to let him go. I have had to face life and death decisions for others in my life since then, made the same decision, would do it again because I took the time to grieve and let them go.

So, it was quite a surprise to start receiving buckets of e-mails, apparently from mothers of preemies, micro-preemies, full term children born with other long term health problems, and photos of almost all of them. I received comparison photos of tiny infants in isolettes, covered and surrounded by beeping equipment, and the same children when they were older, smiling, each adorable. My article had found its way to a micro-preemie blog (or blogs), and the bloggers were encouraged to spew their wrath in my direction.

Boy, were their mothers ever angry with me and my stated views. I never realized that premature children were so controversial with little opportunity for discussion other than support from websites geared to handling, and hopefully, overcoming problems that I can’t begin to imagine, but of which I was certainly made aware.

I have also received e-mails from mothers who were denied the choice of letting their children go. One woman wrote an e-mail which was forwarded to me from the editor of AmChron and CalChron where the item appeared, and cheered my raising the issue. Her child was “saved” and to date has incurred more than $3 million for her care. I have heard from others who are just as frustrated because the course of their lives and that of their families was chosen for them, very much against their wills.

I have not, however, heard from those who made and were given the choice of letting their children go. I suspect that is because they have grieved and gotten on with their lives. Apparently, they don’t spend time on preemie websites, and so, never saw my article.

But, I have to say that most, not all of the e-mails I received from preemie-mothers were rude beyond reason. One woman, who certainly never met me, and knows even less about me than I now do about her, cursed my use of Medicare (for which I am not qualified because of my age) and informed me that I had no right to deny millions of dollars for her child’s care, but I had a lot of nerve expecting her generation to pay for mine. Though the article never mentioned private insurance or Medicaid in any state other than Texas, I heard about how selfish (even to call me a Nazi and Hitler – that from the only man who wrote me – twice), small minded and cruel I was not to consider the parents suffering at their children’s isolettes while they fought the good fight even though their fight was being picked up by private insurance. Many were from military families, and even some would adopt the motherless ones if they only had the room.

As for the micros in my story, I was advised that my point of view was selfish, cruel and thoughtless. What made me God, many wanted to know, because any of these children could grow up to be President or a scientist, or whatever and I, personally, had the gall to stand in their way. One expressed the view that the publication that printed the article should have banned it out of consideration for suffering babies and their families. I answered that as an American, I certainly have the right to write and publish whatever I want, just as she has the right to read what I write, misread it, or not read it, and it is not I who caused their suffering.

Let me point out that each of these state-owned children are left without the one person in the world who would have given them a reason to fight – their mothers and/or other loving family members. Sadly, the only human touch they have ever known is from strangers. No one is there to sit beside their isolettes and fight for them. It is not likely that any of them will become President or anything else because three have cerebral palsy and all of them are not only blind, but have a grim outlook at best.

I am going to restate the focus of that story – If anyone reading this story has to unload on someone, then look to none other than the former governor of Texas, George W. Bush. Remember his tender heart after he became president, when it came to interfering with Terry Schaivo, the Georgia woman in a permanent vegetative state a few years back? The woman had been in that condition for years while her husband fought to remove her feeding tube while her parents objected at every step. Funny, but the law allows one pre-determined decider, and it’s not George W., but the husband.

However, contrary to his soft heart for Ms. Schaivo, Gov. Bush signed into law a provision in Texas that gave hospital administrators the authority to order termination of life support for victims such as she, but who are on Medicaid. My point was, that since the hospital administrator at the babies’ hospital had the authority not to resuscitate micro-preemies, he chose instead, to spend millions of taxpayers’ dollars on saving them, when other hospital administrators in Texas, with the same authority, chose to save none, even when mothers wanted them to. My point was that there should be equal ground rules applied by all those empowered to make these life and death decisions. Frankly, it had nothing to do with me. I just raised the issue so I guess that makes me the messenger. And, yes, when it comes to spending taxpayer money, especially in these amounts, there has to be agreed-upon guidelines, and the agreers have to be those picking up the tab.

Let me state clearly, I don’t wish your children dead, a condition over which I was accused too many times to count, nor did I ever. I believe this is another issue of choice, and should be covered by our national love of privacy. Weather to give birth or save a baby brought too early into this world, is the decision exclusively of the mother, not the father, the doctor or the hospital administrator. Where there are blanks on the page, they need to be filled in. These decisions must be taken in advance. There is too much confusion and a lack of continuity as the issue stands.

As the mother who wrote about her child upon whom millions have been spent, according to her, because the doctors wanted to experiment, all very much against her will, there needs to be public discussion about the other side of premature birth. Mothers patting each other on the back for their nobleness in sacrificing everything to keep their children alive and cursing those who disagree isn’t what is needed here. It isn’t anyone’s business what choice anyone makes regarding the fate of their families on any level.

I thank the preemie blogs for raising the issue, but not in the way it was done. I was not prepared to undertake this discussion, but since it came up, I stand by my opinion, and respect yours, whatever it is.

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