Wednesday, May 16, 2007

Life is a Journey


By now, most of you have heard about the little girl in Washington State, whose parents have decided to have her surgically altered in an attempt to keep her small and manageable. Her prognosis is to be a mentally handicapped child for her entire life. The problem is that normal parents cannot handle a full grown adult infant, as they themselves age and lose strength. These parents had their daughter's uterus, appendix, and breast buds removed and massive doses of estrogen given in an attempt to keep her "little" forever. It was not a decision made lightly, but with the help of medical ethicians. It is being called The Ashley Treatment. This family loves their little girl and takes excellent care of the child. I went to their site and read the comments by perfect strangers and was stunned by the freedom other bloggers feel in forming opinions and being disgustingly frank with these well meaning parents. There were comments like "Cut off her limbs, too --- that would make her smaller" or "How do you know that menstruation would be painful for her --- let her grow up normally". What words did these people not understand? This child has a condition that will never allow her to do anything and caring for her is a huge problem. Unless they have walked in these parents' moccasins, they have no right to an opinion.

This picture is my youngest daughter as she and her husband awaited the birth of their first child after suffering an earlier miscarriage. May of 1984 was a time of great joy and expectation. Every week she went to the doctor and then stopped by our house to tell me what the doctor had said. Her due date was around the 24th of May and she was hoping to have the baby on the 30th, because her birthday, her husband's birthday and their anniversary were all on the 30th of different months. When she missed the 30th, the appointment on the 31st was rather anticlimactic --- but, she didn't come to my house afterward. After a few hours, I told my husband that I was worried and we decided to call her house. She answered and sounded nothing like my daughter. When I asked if something were wrong, her only answer was ,"We're coming over". She was crying and distraught. I am a nurse and she is a nurse --- all sorts of awful things went through my mind, but I could not imagine what the actual problem was. They arrived and my son-in-law went around the car to help the expectant mom out of the car. Her face was blotchy with swelling and tears and he looked like someone had just shot him. "Mom, I had an ultrasound today and the baby has hydrocephalus". My mind was flipping through all the pages of child and infant care from my training and I knew there was hope for this type of handicap with shunts and good neurosurgeons. After a quick discussion of where we were with this (already a week overdue), I called the doctor for her and asked if there was any possibility that the baby could be delivered the next day, since nobody could eat or sleep until the baby was safely here.

Fast forward to the next morning and the birth of a lovely baby girl by C-Section. Things looked pretty good when the neurosurgeon said that a shunt would take care of everything Then came
the CAT Scan of Courtney's brain. June second, the neurosurgeon waltzed into my daughter's room and stuck the films against the window, where sunshine streamed brightly and illuminated a skull with a large amount of empty space. He said, "Unfortunately, this child has almost no brain and I'm not sure we should shunt her". With a shunt, she would live about two years and without the shunt , she would live about three months. The decision was taken out of this young family's hands. The federal government had passed "The Baby Jane Doe" ruling that required that medical personnel notify the authorities, if physicians did not do everything possible for newborn babies. Ironically enough, women could kill their fetuses inutero, but families could not withhold treatment from children who could not possibly live. The cephalic shunt was done the next day and the excess cerebrospinal fluid was drained from her skull and absorbed in her abdominal cavity. This allowed her fontanels to close and her skull to become a normal size. She would never be able to see, hear, eat, speak, roll over or even know she was alive. This is a picture of
Courtney at a couple of months old. Cute, huh? Yes, she was lovely and lovable, but the trick is
--- she is being held up for the picture. She was never even able to hold her own head up. My kids struggled to feed the baby by
dripping formula down the throat of a child who could not even suckle. By eight months old, the doctors finally realized that she would starve to death, if she was not fed by gastric tube, so they operated again and she was fed parentally by machine for her whole life. Her life was a series of specialists from every type of medicine, but nothing could be done to change the prognosis for this little girl. Even with very good health insurance, her medical needs took two paychecks, so my daughter worked part time at the hospital and the kids moved in with us to save money and have help caring for Courtney. Friends and family took CPR and learned to work her Apnea Monitor and G-Tube, so they could babysit occasionally to relieve her exhausted parents. Her medical condition caused seizures and the inability to have feedings while awake. If she coughed, she vomited, so feedings were done at night while she slept. I could hear my daughter and son-in-law running to her bedside all through the night to keep her from choking or to clean her up after vomiting. By four years old, she tipped the scales at nineteen pounds and remained easy to handle. I wonder how hard it would have been to care for a child who grew normally, but never was able to move and was a total lift.In this picture, you can see the plugged G-tube that was her lifeline for
feedings. By forcing her to be shunted, the government rules condemned her to nine and a half years as a prisoner inside a tiny body that did not function. She was loved so much and her family suffered terribly from this enforced slow death by well meaning souls who have no idea what they have brought upon such children. We watched as she writhed in convulsive seizures and wondered each time, "Is this the day?" Families of severely handicapped children need to be free to make educated decisions regarding the medical and surgical issues involving these children without input from the public at large. I feel that the parents of Ashley in Washington should be applauded for their choice to keep their daughter small and manageable in order to care for her at home.
This picture shows Courtney as she was getting older. You can see the spasticity in her body and know that she had no cognitive function by the way her hands are curled in decerebrate movement. If she had been born in an earlier time without medical intervention, she would have passed quickly from this world of pain. Once again, one of God's special little ones was snatched from the jaws of Heaven by do-gooders without knowledge of her best interests. Courtney lived for nine and a half years suffering through pneumonias, abdominal surgeries for obstructions and clam shell braces for a scoliosing spine. Her family watched helplessly while she suffered with multiple difficulties. How can anyone say what medical procedures should be done to a child, if they are not the ones who have to live with the consequences? Our family has lived through the heartache of birth defect and we would support Ashley's family's decision to prevent her from becoming adult size and necessitating care outside a loving home.
I first wrote this in January of 2007, when I heard about Ashley's family on television and the problems they were having with public opinion. This week, I heard that the hospital where her surgery was done is in trouble for not having a judge approve of the surgical procedures done to the child. The world has so many problems to handle --- why can't they leave this family alone to deal with their personal difficulties and to care for their child?

13 comments:

Matty said...

Kacey,
Sad enough what that family had to go through, and now they have to fight through red tape. My prayers are with the family...God knows they have enough on their plate without adding more.
Those of us who have healthy children are not even aware of how much work and sacrifice goes into taking care of a special needs child.
If there is a website or somewhere I can write to help this family, please let me know.

momofalltrades said...

Kacey, Thanks for sharing your story. Dispelling ignorance is what it takes to change views and hearts.

Loving Annie said...

Kacey,
what a tragedy for Courtney and your family to have had that heartache...
Nature sometimes knows best, and the meddling of modern medicine can cause more harm than good...
My heart goes out to you, your family, and any other loving family, like Ashley's, who is faced with those difficulties.

Big Dave T said...

It takes exceptional courage and dedication to be parents like your daughter and son-in-law. You would think our government has enough problems to deal with without meddling with truly intimate and private family dilemmas.

Boatwoman said...

The courage and love is without doubt there for all to see. I lost a daugthter in 1985, so know the pain of actually losing a child.
My love and thoughts are with you and your family....Thank you for sharing your story.

Summer said...

No one knows the heartache and suffering your daughter and your family went through caring for Courtney. You know first hand how Ashley’s family feels. Thanks for sharing Courtney's story. I am sure she is in a much better place now.

simply me said...

Kacey - what an honest and loving tribute to your granddaughter and her loving family. Once a month I am on call at a hospital (as a social worker) and I astounded by the power of love and devotion of families. Until one walks in these shoes we have absolutely no rights to opinions but only to listen with a wide compassionate heart. I just finished reading "My sisters Keeper" by Jodi Picoult about one sister who is ill with APL and the one the parents had in order to keep the other alive. Very thought provoking and also a look at the other side.
BTW - I just saw your post on my trip to Italy...Don't forget you could go and do absolutely nothing.LOL Thank you.

Blessings to you and yours.

BeverlyM said...

Kacey,

I'm so glad you stopped by and commnted on my blog, otherwise, I would've probably never found you in BLOGWORLD and read your truly inspiring story.

Thank you so much for sharing and God Bless!

Loving Annie said...

Happy Sunday the 27th, Kacey !

And thank you again for your sweetness --

Loving Annie said...

What's new with you today, Kacey ? It's Tuesday the 29th - can you believe that this year has already gone so fast ?

Loving Annie said...

Hi again on Wednesday, Kacey ! Just checking on you to see what you are up to !

Loving Annie said...

Hi again on Thursday Kacey ! How are you doing ?

You are right, 75 is too old for me ! But I would be very happy for someone between 44 - 54 !!! (I'm 49)

I am glad that you and he have such a wonderful relationship, Kacey. It is a VERY good thing to have a connection like that, a bond and an intertwining of lives and souls...

*smiles*

Chris said...

Hi!

Thanks for coming over to my blog and telling me your story. My heart goes out to you all and please know I am honoured to have been told about your story and send my love to you all.
Pop back to mypeggypeg at any time you want to and say hello! Thanks again. Chris