Friday, June 05, 2009

A Failed System

Through creating Elizabeth's blog I have had the privilege to meet some really amazing Mom's who are in similar positions. Through chat groups we discuss our concerns, ask questions and support each other as we learn about raising a micro-preemie. There are some Mom's who are very present in our chat groups and who offer lots of support and advice. A recent thread on our list serve left us all speechless; a mother who is an avid member of our group has been charged with allegedly causing harm to her beautiful little girl. This beautiful girl who due to her prematurity has had some very challenging medical conditions and has spent much of her life in the hospital, with home nursing and in various therapies to help her overcome her challenges. The mother has kept a daily blog of her life and I have at time left encouraging comments as I think how hard it must be to have a child with multiple medical needs. This little girl has recently been hospitalized for weeks with undiagnosed symptoms/infections and due to this the hospital hid video cameras and observed the mother wiping feces into her daughter central lines (IV). The mother allegedly admits to this act which has caused her daughter to be gravely ill.
At first it was disgust that I felt as this child was suffering due to her mothers indescribable acts but then I thought about what would cause someone to do this their own child; mental illness, being unable to care for a child with medical and physical conditions or wanting to put her other children first. I am not condoning what this mother did at all, it is indescribable. But again it makes me realize how little support is given to parents with micro-preemies. Parents have spent months at their child's bedside with the support of Nurses, Social Workers and Doctors and when you have a question or concern it is dealt with immediately. Once you are home with your child the support is gone there are very few people who can and will answer honestly the questions you have about your child. Once you are home you are socially isolated as you are repeatedly told of the risks of RSV therefore most social contact is avoided. Your new life at home with your baby is filled with trips to Dr's, therapy sessions, RSV injections and advocating for your child. You as a parent are told by strangers how to interact with your child, how to pick them up, how to play with them and during all this you are watched and critiqued for your efforts or lack of. The beliefs and misleading information that your preemie will be okay once you are home hits you like a wall once oral aversions, sensory issues, reflux and developmental delays begin to arise. Being told that your child has a disability due to the fact that you could not keep them inutero long enough causes your 'mommy guilt' to go in overdrive. Through all this parents receive little to no social/emotional support and their concerns with their child are often ignored by health professionals.
It is amazing that through all this parents are coping as well as they are. Some Mom's I talk to have been diagnosed with Post-Traumatic Stress Disorder, Depression and Anxiety and through the help of medication and therapy they are coping better. Hearing the case of this child and what she endures makes me so angry at the lack of assistance/support for parents and the constant throne of the media that depicts preemies as unscathed by their early arrival.
What to do about it. I don't know but I did talk with a staff member of the NICU where Elizabeth was cared for and talked about a role of parent liaison or establishing a group for parents when their children come home. The system has failed this child and may have led her mother to do these indescribable acts. I hope that now this child's health will improve and she can go home to her siblings and her father and that her mother gets the help that she requires.


Ellen Seidman said...

Hi. Wow, that is quite a troubling story. That mom probably has a syndrome called Munchausen's by Proxy. It's a syndrome that involves attention-seeking behavior (i.e., a mother does harm to a child in the interest of drawing attention to their situation) and clearly it is the sign of a depraved mind. It is hard to muster up sympathy but, at the same time, what you said rang so true—the mental stress could definitely have had some effect.

I hope this poor little girl is going to be OK. It is wonderful that you took a sad story like this and tried to make something good come of it; a parent support group is a WONDERFUL idea.

Sherry C said...

Oh what a sad story that breaks my heart.