Kind of how I feel after reading the story.
Posted on 07/20/2006 4:36:03 PM PDT by wagglebee
(Note: A mother known to LifeSiteNews.com, and who would like to remain anonymous, wrote the following article in response to an op-ed that appeared in the Globe and Mail. That op-ed was written by a mother, calling her self C. Smyth, who told how she chose to abort her unborn child because the baby suffered from a chromosomal disorder. “Isn't it more cruel to bring a child burdened with so many disadvantages into the world?” Smyth wrote.)
July 20, 2006 (LifeSiteNews.com) - The graph is still taped to the inside of my kitchen cupboard, pencil on a string dangling down beside it. It depicts the progression of my newborn daughter’s weight, most days showing a moderate increase, and thus reflects a thriving child. It ends abruptly at 80 days.
Recently, C. Smyth shared her agonizing and very personal decision to terminate a pregnancy after testing revealed a severely disabled child.
My husband and I were faced with a similar difficult decision. We too were in our 40’s, educated and financially stable. We have 5 children at home and we love sports and travel. The kids do well at school, are athletic, and all are healthy as horses. Life was good to us.
We first heard of our daughter’s genetic condition long before she was diagnosed. It was considered a lethal condition, an extra 13th chromosome. Most babies don’t make it to birth and those that do live a few years and are severely disabled. I thought, “Well, what is the point of that life?”
When the geneticist uttered the dreaded words, “your daughter has trisomy 13,” and it was a diagnosis about my baby and not someone else’s, the reality was entirely different. With the ferocity of a lioness, I wanted to love and protect this little girl, and do all that I could for her. If her existence was only to be a few more months of kicks and flutters in utero, then I wanted her to have that life for the sake of both of us. We named her Annie.
After the diagnosis, the research began. It was frantic, and went long into the night for months. I researched medical details and personal stories. We communicated with parents all over the world who had a child with this very rare condition. We discovered that the babies can live longer, but they may need a lot of medical treatment. The most amazing discovery was that the parents continually stated that they treasured and delighted in every day of their child’s life. They knew with certainty that the gift of that life was not theirs to keep. The children, called “survivors” were blissfully happy and progressed developmentally, albeit slowly. It became increasingly clear to us that unless the medical intervention to provide life was excessive, Annie was better off alive than dead.
We were not sure how we could do it. I was the kind of mom who usually forgot to pack a diaper bag. I would often be impatient when one of my children couldn’t master the math skills in their homework. Could I ever develop the patience for a child who may not be able to sit on her own for a year? How could we fit Annie’s care and needs into our busy schedule? We had 5 soccer teams in the summer! We were more frightened than we had ever had been in our lives. Love for Annie compelled us forward.
Annie was born full term, crying. She was mildly afflicted, as the syndrome goes. She needed a very small amount of oxygen and had hypoglycemia. Annie could not take all of her nutrition orally and so she had an NG tube (nasal gastric tube), which was a tube that went in through her nose down into her stomach. I became skilled at its reinsertion, every 3 days. We fed her expressed breast milk. Somehow, we dealt with all of the issues. We knew that with time Annie would take more feedings orally and her need for oxygen would lessen, and likely be eliminated completely.
We knew the first year would be rough. Everyone pitched in. Our 12 year old son took over the lawn maintenance and his older sisters took on Annie’s developmental progress and bought “mind stimulating” music and ordered her a “Bumbo seat” to help develop strength.
The whole family came together in ways that I never dreamed possible. We discovered how true our friends and family were by their support and encouragement. Somehow, the homework got done and the gang made it to their soccer games.
At age 75 days, Annie smiled at us for the first time. Even now, a year later, the memory of that first and only smile causes me to cry.
Annie experienced respiratory distress at age 80 days and was transferred by ambulance to the Children’s hospital. The physicians told us she had pneumonia. Our beloved baby died less than 24 hours later.
There are two ironies to this story.
The first is that we thought we had a choice of life for Annie but the reality is that we did not. The medical records, which we instinctively felt compelled to obtain and have had reviewed, reveal no signs of pneumonia. An effective “Do not resuscitate” was ordered without our knowledge or consent. The final computerized medication report from the intensive care of an excellent hospital is inexplicably missing.
The hospital issued a letter of apology stating that sometimes “… communication does not occur in as clear and consistent a fashion as we would wish. For that, we are very sorry.” Recent developments in medical science can be used to diagnose and terminate certain lives but the choice to use medicine to prolong these lives doesn’t seem to be an option.
During her 80 days, our little Annie taught us our greatest lessons in life. Through her life, we experience the deepest sorrow and the most intense love. She taught us the true meaning and purpose of life and we are forever changed as a family. Our children have learned that if they are ever in need, their family will love them, protect them and do anything to support them, just like we did for Annie. They developed an incredible empathy for the disabled and the vulnerable.
The ultimate irony is that this little girl who seemed so broken, flawed and seemingly without purpose or value, was in fact, perfect after all.
And if they had murdered her, as no doubt the geneticist recommended, they would have missed it all.
DISCUSSION ABOUT:
When What Seems Broken is Perfect: The Mother of a Disabled Child Tells her Story
WARNING: Be prepared to cry.
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This is a must read!
'An effective “Do not resuscitate” was ordered without our knowledge or consent. The final computerized medication report from the intensive care of an excellent hospital is inexplicably missing.'
NEVER leave the bedside of a very ill hospitalized patient. The hospitals are crazy. DNR has to be a specific request, what on earth happened here?
by
Emily Perl Kingsley
© 1987 by Emily Perl Kingsley. All rights reserved.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Kind of how I feel after reading the story.
Thanks for the repost. Sometimes we need reminding.
You'd have to be made of stone not to cry after reading that one. A lovely essay.
God bless you and your precious grandchild.
I knew a family who aborted a Down's Syndrome baby because they didn't want it to "affect" their older child. Tell me, what would the "affect" have been? Would he have missed much in life with a disabled sibling? Or would he have gotten to see, learn, and experience more things than he has been able to now with only school and baseball and healthy friends?
Thank you.
For posting this heartrending story, thank you, wagglebee, with tears flowing and prayers going up for this extraordinary family. I hope many pregnant, or someday to be pregnant, women read it.
You're welcome. :-)
This is truly criminal - these parents sent their child to the hospital to be healed, but instead the child was denied medical help, and died of respiratory infection. The child should never have been left alone in the care of these criminals...
No one should ever again assume that hospitals and doctors have the best in mind for their patients; the elderly, the weak, and the very young should all have skeptics as advocates, asking questions, demanding answers and monitoring care. Even healthy young adults are at risk, when accidents create coma or brain damage, for their undamaged organs are so very profitable to the hospitals. When medical professionals tell us that a loved one will "never recover" is "hopelessly brain damaged", "brain dead" or "would be better off left to die" one must ask the question: is their any profit to be made off of this persons death? Are they concerned about payment that may not be rendered? Are their any body parts that might be sold from this person once they are deceased? Or perhaps does the medical professional assume that this person will not recover because of prejudices/assumptions made about the elderly, the disabled, or their families?
I had wonderful doctors by my side when I delivered my son, and I was truly blessed. However, I had three friends who delivered prematurely at different times, and all three were respectively advised to withdraw respiratory support from their babies because they were "too brain damaged". Each time, a doctor came around and told the parents that the child would not have a quality life, and that the support would do no good, and that if it were his child, he would choose to withdraw care. Even though the doctors were different at each hospital, and were seperated by time and space of ten years and hundreds of miles, it was as if the doctors' speeches all came from the same book. Two of those babies went on to become wonderful young children, full of life and hope. The third died at the hospital after the parents consented and withdrew the breathing apparatus.
Thank God two parents allowed their children to receive the best care available, rather than relying on the recommendations of the "doctors of death".
Doctors are no longer bound by the Hippocratic Oath, and Hospitals are not longer havens for the sick. Although many good medical professionals exist, they are becoming overwhelmed by the demands of the institutions they serve. Once families recognize this, they will no longer assume that doctors, nurses and hospitals have their best interests in mind; they will then stay with their loved ones 24/7 while they are in the hospitals, and never let them out of their sights. They should sue the hospital, and demand a criminal investigation at the very least.
It's too bad that the baby wasn't given a chance to live by the ER staff. I'm confused as to why they would not try to resuscitate?!?
Because decisions to resusitate are made by callow residents who staff most ERs.
I know what the effect is . . . their older child knows that if he somehow becomes "not perfect" - disabled or critically injured in an accident - his parents may kill him.
How's THAT for burdening a child?
well, have to go, can't see for the tears. I've read this before, I cry every time. Today my son said, "Mama, I'm darn cute, aren't I!" Well, he is. And the world is a better place because he is in it.
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