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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Friday, April 27, 2007

 

When What Seems Broken Is Perfect

WHEN WHAT SEEMS BROKEN IS PERFECT is a guest post by Barb Farlow. I got to know Barb after I wrote a letter which was published in The Globe and Mail on "prevention." The article was written in February 2007 and titled: "Expand Prenatal Gene Tests, MDs Urge."

Barb called me to discuss her daughter who was diagnosed with Trisomy 13. Barb is a professional engineer and mother of five children at home. She is married "to the greatest guy in the world." After an incredible amount of effort and a lot of help from ethicists, health care providers and patient safety advocates in Canada and the US, she was able to obtain change at a presitgous hospital here in Toronto. The hospital invited them to tell the story of their daughter -- Annie --to the Grand Rounds to which she says "we are certain that it will have a positive effect for the care for all special children." Annie's story will also be told at medical schools, a genetics and ethics conference in Calgary and an International Ethics Conference.


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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.

How can the value and purpose of a life be determined? Can these be measured by longevity, intelligence or the productive contribution of an individual to the economic base of society? Even more important, who has the right or ability to make this judgment?

My husband and I were recently faced with a very difficult situation. We are 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 were pleasantly surprised when we discovered that we were expecting a new life to love and nurture.

We first heard of our unborn 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. We 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 increasing 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 were aware that 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.

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7 Comments:

Anonymous Anonymous said...

I was deeply moved the post by Barb. I feel empathy towards her, although I do not see the loss, but rather a gainful experience that has kept their family even more solid.

10:54 AM  
Anonymous Ms. Clark said...

I'm sorry, but I have to ask. Did the hospital murder this baby? I hope not. Her blood is on their hands if they did.

I'm so sorry for the family. How awful that they lost this little girl.

3:23 PM  
Blogger Kassiane said...

Annie was indeed perfect...the post is dripping with love, and loss. Many questions come to mind regarding the hospital & their attitude towards disabled people.

My sympathies are with the whole family. Annie's story brought tears to my eyes.

9:32 PM  
Blogger Club 166 said...

Two things have struck me about "Do Not Resuscitate" orders over the last twenty years:

1) In talking to physicians (and reading publications) from non-US countries, it has become increasingly common for physicians/hospital management to create a culture where value judgements are made without patient/family input, and DNR orders entered into the chart.

2) DNR orders are often interpreted (even in the states) as "Do Nothing Helpful". They are only supposed to cover what you do if the patient has a cardiac or respiratory arrest. Instead they are interpreted to mean that no support of any kind will be given to patients.

Fortunately for those in the states, I have not seen the case where DNR orders are written without patient or next of kin (if the patient is incompetent) input. I have seen, and questioned, numerous cases where staff ignore a patient, just because they have a DNR order.

What happens in the Netherlands, and sometimes elsewhere, is that "terminal sedation" has been instituted for patients who are DNR and someone decides that they are in pain. Hence the significance of the absence of the med sheet from the last day of admission for the child.

6:51 AM  
Blogger Club 166 said...

Oh, and for Anonymous-

The greatest loss (from a societal standpoint) is that if one is disabled and deemed by society to not have a "quality" life, one might find themself one bad cold away from being terminated by the "caring" system and practitioners who you are supposed to be able to trust in a time of need.

6:54 AM  
Blogger bigwhitehat said...

That was pretty amazing.

2:11 PM  
Anonymous mike stanton said...

Estee
please thank Barb for posting this. I felt humble reading it.

4:32 PM  

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