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| "We see the beauty of these children,
both in themselves and in the eyes of their families. In a time when as a
society we strive for perfection, we have seen that God has created what
initially appears to be the least perfect, the most perfect. For isn't our
ultimate purpose to create love in the world? These babies bring more love
about in even a short life time that most people in a long one."
- Barbara Farlow (Annie's mom)
Click here for larger Montage Viewing
Annie's Story; a Tragedy of Ethics
The life and death of a much loved baby ...
WHEN
WHAT SEEMS BROKEN IS PERFECT
by Barbara
Farlow(Annie's
Mom)
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. |
Canada
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Telling Annie's story at the World Health Organization (WHO)
Headquarters, Geneva Switzerland |
Update 2-10-08
It has been over two years since our daughter Annie died within 24 hours
arrival at a Children's Hospital with a reputation of excellence. We remain
traumatized as a family by the events surrounding her death and by the
medical care she received from the staff in whom we had placed our trust and
respect.
The Deputy Chief Coroner and his Pediatric Committee wrote "the events of
the final 24 hours and the initiation of palliative care together with
writing of a DNR order,...... do not represent appropriate forms of care"
and added "...life prolonging treatment may impose a greater burden and
greater distress on the child than its withholding. However in the case of
Annie Farlow there is no evidence that she was in such distress and it was
by no means certain that she would have to undergo prolonged burdensome
interventions such as prolonged ventilation or distressful surgery"
The prestigious children's hospital apologized in writing; "Sometimes, when
we care for children such as Annie who have very complex care needs, and
there are many individuals involved and consulted, communication does not
occur in as clear and consistent a fashion as we would wish. For that, we
are very sorry."
The Coroner was unable to determine a specific cause of death so it was
vaguely attributed it to "complications of trisomy 13." This is comparable
to saying that an elderly person who died in an ICU died of "old age." It is
unacceptable.
 There
can be no doubt that most babies born with trisomy 13 (or 18) have too many
things wrong with them for aggressive treatment to be beneficial, but not
all. Every child is unique and deserves a diagnosis based on their own
presentation. We were assured by three departments before Annie was born
that she would be treated according to hospital policies. Our daughter was
born full term, 7 pounds, Apgars of 8/9 with normal tone and with good moro
and suck reflexes. She could see, hear, had no brain or life threatening
organ defects and had a well-functioning GI system.
Annie received excellent supportive care for hypoglycemia and mild pulmonary
edema for the first six weeks. We were with her night and day and developed
an excellent relationship with the staff. However, it appears that Annie was
labeled and covertly ruled out as a surgical candidate due to her genetic
diagnosis.
When a senior pulmonologist suspected that Annie had a tracheal disorder and
suggested two non-invasive tests, we were told he was wrong and the tests
were not done.
When Annie's carbon dioxide levels became critical, we were not advised that
she was headed for a respiratory crash. Her face turned and stayed bright
red and the head pediatrician shrugged and said it must be a medication side
effect. The physician who is reviewing the records said Annie sure was a
tough baby who fought hard to have survived so many weeks with critical
blood values.
When Annie had episodic respiratory distress, with a prolonged expiratory
wheeze, we were told that it might get better on its own and it was best to
"wait and see." She was sent home from the outpatient clinic 42 hours before
death with no tests and no measure of comfort for her distress.
When Annie was rushed back to the prestigious children's hospital several
hours later in acute respiratory distress, specifically for tracheal
assessment, our trusted and respected paediatrician told us her trachea was
fine and that she had pneumonia. (Low WBC, good bi a/e, no consolidations)
The emergency records showed that someone had written that the ENT
department needed to be contacted but then scratched it out.
When Annie suffered a respiratory crash on the ward she was not admitted to
the PICU for 1.5 hours, although the hospital standard transfer time is 15
minutes.
When Annie entered the PICU the intensivist was annoyed that we would not
agree to a DNR order without a diagnosis of Annie's problem so he entered
one anyway, without our knowledge or consent, the alarms were silenced and
the 1:1 nurse left the room. The intensivist described a surgery that Annie
would not survive for which we later found out that there was no diagnostic
basis.
When Annie's dad noticed the SAT numbers silently plummet, he shouted for
help and no nurse in the 4-bed room came forward. He had to run down the
hall looking for help.
When we obtained the medical records, we noticed that the final medication
report was inexplicably missing and that multiple violations in nursing
standards had occurred.
Everyone apologized: the hospital, the Chief of Critical Care and even the
President, personally. However, the apologies were not backed by effective
plans for change. We have had no choice but to appeal for a coroner's
inquest (with the support of all of the major disability groups), make a
complaint in the Human Rights System and file in small claims court.
Children with trisomy 13/18 are a challenge to the medical system both
medically and ethically. When the medical system or a particular hospital
fails to provide appropriate medical care according to hospital policies,
professional codes of ethics and basic human rights, something is very
wrong. Alarm bells must ring.
The choice of many to terminate the lives of children who are not "perfect"
must never impact the medical care that children born with these conditions
receive.
Annie deserved a chance if we decided, based on consultation with the
physicians, that it was in her best interests. This was our fundamental
right as her devoted and loving parents. If surgical or aggressive treatment
was not in Annie's best interests, then she deserved a dignified death with
her loving family surrounding her.
It is the right of a physician to withhold treatment that he/she deems to be
inappropriate but it certainly is not his/her right not to share the plan of
treatment and allow input from the family. It is immoral and unethical to
withhold comfort care measures for a patient who is suffering and to deny
that a problem exists.
Our goal to ensure that no child ever suffers and dies in the same manner as
Annie. If surgical life saving treatment was not in her best interests, then
she deserved a dignified and comfortable death.
This was her fundamental human right.
- - - -
5-20-06
Annie was suspected to have trisomy 13/18 via ultrasound in the 21st week.
We researched the condition in every way possible way. We decided to
consider medical treatment because we could see that she would be happy and
knowing that, we could not deny her a chance. It was a very difficult
decision, but we wanted to keep the doors open. We discussed our choices at
the hospital with individuals from three departments. They assured us that
Annie would be treated according to the existing policies. In other words,
she would not be denied medical treatment, or surgical considerations
because of her genetic condition.
Annie was born very easily, one day late and weighing 7 lb. She could see.
She could hear. She didn't have the catastrophic heart defect that had been
predicted from 3 prenatal echos. (Hypoplastic Left Heart Syndrome) In fact,
there was nothing wrong with her left sided heart structures. The
cardiologist predicted that if she was a "normal" child she would need an
aortic valve replacement by age 2.
At the age of 75 days, we were very blessed to see Annie smile. It was
something we will never forget.
At age 80 days, Annie's life ended tragically when she died from respiratory
distress. Annie's story is not yet complete, as the circumstances
surrounding her death are unresolved.
We would like to thank everyone who has shared their story. It helped us
tremendously. This site gives such meaning to the children's lives. With the
help of this site, the children become human beings and beloved sons and
daughters, not genetic syndromes. Anyone who has spent hours reading medical
descriptions of trisomy 13 would understand this. Whether the children live
minutes, hours or years, their lives are a special gift.
Barbara Farlow
anniefarlow@gmail.com
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