Playing Russian Roulette with God

This is a sore subject for me and I've put off writing about it for many months - actually before I ever started this blog this was a sore subject for me.

Recently there have been comments at The Preemie Experiment that hint at resuscitation limits on micro-preemies. The comments don't come right out and say it, but its implied and the subject is danced around... a lot.

This is a hard subject, as a parent, to even think about, but parents of preemies or those affected by prematurity understand it well.

Do you set a limit on when you would allow your child to be 'saved' by the medical establishment?

I do. My husband and I have spent many nights talking about this.

I first brought it up a year ago when I came across the story of a 30-weeker who was suffering greatly from an IVH resulting from his premature birth. An MRI at age 3 was so bad the doctors said they were shocked he was alive. At 5 years old he was in a vegetative state and did not know anyone, suffered daily seizures that were getting worse and was breathing and eating artificially. His parents made the decision (with doctor support) to withhold his food in an effort to end his suffering - a la Terry Schiavo. It took him 4 weeks to pass away.

His parents divorced a year after his birth when he was first transferred to a rehabilitation nursery/hospital. His mother couldn't work as taking care of him required all her time/effort so they lived in subsidized housing. She got all her clothes from Goodwill and relied on her church for handouts. She had no real friends because her time was so focused on her son (despite 24/7 nursing care). She was attempting to go back to school but the night classes were taking a long time. She had essentially lost her identity.

The story I read about this family was heart breaking. His parents attempted to withdraw life support systems from their boy when he was 2 weeks old but due to his gestational age the hospital took temporary custody of him and barred the family from making any decisions about his care. The courts stepped in and 'saved' the boy. The doctors stepped in and 'saved' him to live a life dependent on machines with no brain left to use.

His parents regained control when he was 10 months old but by that time he was stable enough to be transferred to another hospital and life as they knew it would be turned upside down, again.

His mother said, time and time again that the aggravation they felt for themselves was nothing compared to the aggravation they felt for their son. By the time he was 2 he had undergone 17 surgeries, by the time his death came about he had undergone more than 30. His mother said she hated holding her son while watching him go through a 30 minute seizure or filling his feeding pump only for him to rip out the tubing and have it go EVERYWHERE but into him, where it belonged.

Where is the fairness in condemning a boy and family to a life consisting of this? At what point does someone get to say 'Enough!'?

In 1950 my grandmother gave birth to her first child, a boy, prematurely. I'm not sure how much because she never talked about it and no one asked. His name was Richard but he was called Dicky. Dicky was 4 years old when my mother was born, followed 2 years later by my twin uncles. When Dicky was 6 he was institutionalized.

Dicky was a 60 lb newborn at that point. He couldn't walk or talk and had, what my grandmother called, 'fits' on a daily basis. My grandfather suffered from mental illness and spent the majority of my mothers childhood as a guinea pig for many of the medications now in use (and not in use) to treat mental illness and as such was absent from their lives. Although they never divorced, my grandparents were never 'married' and my grandfathers death in 1988 was a relief to my grandmother. My grandmother had no help and had to institutionalize Dicky.

They visited him twice my mother said. At age 21 he choked on food (chicken bone?) and died. My grandmother, to the day she died, never talked about Dicky.

I saw pictures of him - he looked just like my brother when my brother was a baby, cute little brown curls and round cheeks.

A few years ago I went to my grandmother's family reunion. I knew nothing of these people - I had only met one of them once in my life. My mother had little to do with them also but my grandmother had recently gone into a nursing home and we wanted to get in touch with everyone.

I met a bunch of really nice people. My grandmother, as it turns out, was the oldest of 10 children. Her mother died of breast cancer when she was young and her father died at the kitchen table of a severe asthma attack when she was a teenager. The 'state' took the four youngest and a cousin moved in with my grandmother to help her raise the rest. She had, essentially, raised children since she was one herself.

At the cookout I heard her sisters/brothers talk about how rough my grandmother had it when trying to get help for Dicky when he was very young. I'm glad I'm born in the time I am now because there is much more help now for struggling mothers. It helped put her life/trials into perspective for me.

When Arianna was born, rather when I was in labor with her I remember a resident in the ER telling me, 'It'll be ok...' and I looked at her point blank and said 'Of course it will be ok, I'm a preemie myself - she'll be fine!'

I'm a preemie and dealt with delivering a preemie myself yet I was not aware, at the time, of all the dangers of being born prematurely. Just after she came home from the hospital (and then back to the PICU) I started doing some research and came across the 'prematurity secret' (at least thats what it seemed like to me) - its not all 'teeny tiny babies who grow up to be fine'. There are a lot of preemies severely affected by their births and with the prematurity rate rising as much as it is, yet the severity of its impact not declining, thats really scary!

Last fall we made a conscious decision. If we decide to have another child we do not want to use medical intervention to keep me pregnant if delivery is imminent prior to 26 weeks. How will we do this? I don't know how (or if!) just yet, but I'm terrified. I sat in my OBs office just a few weeks ago and cried so hard she couldn't understand me when I talked about trying again. The worst part was when she told me I may not have say in what happens in the delivery room.

Parents are not allowed that say:

The Baby Doe Law or Baby Doe Amendment is the name of an amendment to the Child Abuse Law passed in 1984 that sets forth specific criteria and guidelines for the treatment of seriously ill and/or disabled newborns.

The Baby Doe Law mandates that states receiving federal money for child abuse programs develop procedures to report medical neglect, which the law defines as the withholding of treatment unless a baby is irreversibly comatose or the treatment is "virtually futile" in terms of the newborn's survival. Concerns about a child's quality of life, which are often the primary factors in deciding to withhold medical treatment from premature infants, are no longer seen as valid reasons for withholding medical care.

The law came about as a result of several widely publicized cases involving the deaths of handicapped newborns that resulted from withheld medical treatment. The primary case was a 1982 incident involving "Baby Doe" a Bloomington, Indiana baby with Down syndrome whose parents declined surgery to correct a blocked intestine, leading to the baby's death. The Surgeon General of the U.S. at the time of this incident, C.Everett Koop, argued the child was denied treatment not because the treatment was risky but rather because the child was mentally retarded. Koop commented publicly that he disagreed with such withholding of treatment.

Is that right? I don't think so. Many parents want everything to be tried to save their children, whatever the outcome, and I wish I could share that. But knowing all that can happen and the suffering they could go through... I can't. Does this mean we should close up the baby shop? Yes, I think it does. No, I don't think so. It's like Russian Roulette. Who wants to play?

Does this mean we are unfit parents? Does this mean we don't have unconditional love? What is unconditional love in regards to the parent of a preemie?

Knowing my support unit, the history of my family and stories of other preemies we don't feel we are able to survive as a family if we had a micro preemie with severe problems... It makes me so very sad to post this and I know even in the preemie community I have no support - after all many preemies 'turn out just fine', but many also do not. I think you hear more about those that 'made it' than those who don't and that's too bad.

Why do some parents test for birth defects when pregnant? How often are those families chastised when they make the decision to end the pregnancy as a result? More often than not, people 'understand', right?

Why does the decision to have a child have to include such decision as: "Shall we get divorced?", "Shall we lose half our income?", "Shall we lose all our friends?", "Shall we give up going out together on a date night or on a vacation?", "Shall we give up any thought of retirement?". These are all realities for a lot of families with severely affected preemies - and thats just the parents side.

How about "Shall we try surgery again?", "Shall we try to get the lift in the house for junior? He's too heavy for me to carry", "Shall we try putting him in a group home now?"... Why do ANY parents have to think of ANY of these things?!

There are far to many families who suffer life long from prematurity and we, as a married, devoted couple feel we can not... Knowing my reaction to stress, we know I can't.

Why not see how they do and then make the decision? Because many times that decision is taken away from parents! (I'll have to dig up the exact lawsuits in the literature so I don't have them to post here)

The decision to have a child should be a happy one and instead we are terrified and ashamed.