Home SEARCH About This Site Site Visitor Comments Website NEWS & UPDATES Contact
Trisomy 13 - Patau Snydrome - Photos, Support and Resources

  Embracing Life - One Moment at a TimeTM

Trisomy13Archive.com


This is an archive of the LivingWithTrisomy13.org site (2005-2010) for current information please see:
http://www.livingwithtri13.org

To UPDATE AN ALBUM
please email Vanessa@livingwithtri13.org

In Loving Memory of This Treasured
Trisomy 13 Child

< Memories Page

Anne (Annie) Mary Farlow
 

May 25, 2005 - August 12, 2005

  Canada

Annie Farlow was nominated by her province's Community Living organization (advocates for people with developmental delays) for an "unsung hero" award for that organization's National 50th anniversary celebration.
 

 
 
Website: What Happened To Annie?
A Four-Year Quest for Answers How did Baby Annie die? Why won't the world famous hospital allow us to view the medical chart?  Why won't the Chief Coroner and His Committee Answer Simple Questions about Annie's death? Imagine if you rushed a loved one into the hospital...someone with fragile health for whom you knew difficult decisions might need to be made. Imagine if that person died, less than 24 hours later, after the doctor told you they needed very difficult surgery that they wouldn't likely survive.  


Telling Annie's story at the World Health Organization (WHO) Headquarters, Geneva Switzerland

Publications & News

Seeking Justice for Annie – Overview Letters of Support Speeches and Publications

For the love of Annie – A Q & A with Kids Rehab BLOOM

Misgivings  By Barbara Farlow, mom to Annie
© 2009 The Hastings Center, Reprinted by permission. This article originally appeared in the Hastings Center Report, vol. 39, no. 5 (2009): 19-21

The decision to accept disability: One family’s perspective By Barbara Farlow BEngSci MBA

Justice for Annie - Facebook page
Facebook Group is about getting justice for Annie Farlow, an infant who died under suspicious circumstances.
... those who care about disability, consent, parental rights, and health care should check out the details


Click here to add comment

"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)

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.

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

    

 

submitted 5-20-06

 

 

 

All text and graphics © LivingWithTrisomy13.org 2005-2010 - all rights reserved
Use prohibited without permission
All information found on this site was submitted to us directly by the families
and used on this site with their permission.

Cover photo of Pamela Sullivan & her precious daughter Maria, copyright Pamela Sullivan 2004, used with permission.
If We Hold On Together  Song Copyright 2002 by Patricia Welch, Ltd. All rights reserved.   Used with permission.
 
*Disclaimer
All material on this site reflects our personal journey with raising a Trisomy 13 (Patau Syndrome) - child. It is not meant to replace any medical advise of a professional familiar with your specific condition. The personal journeys of any parents on this site are only their opinions and their own journey with having a Trisomy 13 child. You should consult with your own physician or other medical professional regarding the opinions or recommendations expressed within these pages as to your own child's symptoms and medical condition.
 
 

Translation
Search Specific Languages or Countries