Doctor Refuses to Treat Child With Trisomy 18, Tells Mom “She’s Lived Longer Than Expected”

National   |   Brad Smith   |   Sep 29, 2014   |   4:50PM   |   Washington, DC

We have a friend, Kayse, here in Michigan who has a beautiful little 2 year old girl named Lila.  Kayse sent us an update the other day (Saturday September 27th) because Lila has been sick for the last couple of weeks.  Most people have read about the viruses making their way around the country and get a little nervous about their children getting one of these viruses that have put so many children in the hospital.

Well, we pay close attention to these updates that we receive because Lila has Trisomy 18 (Edwards Syndrome) which is the same chromosome abnormality that our 5 ½ years old daughter Faith has.  These respiratory viruses can be particularly difficult for our children.

lilaLila has been hospitalized twice this month for a total of about 11 days for a bronchiole infection and lack of oxygenation. Wednesday evening she was discharged from the PICU (pediatric intensive care unit) on a small amount of oxygen. Doctors told Kayse to continue with care at home and to return if she gets a fever of any kind or if she gets worse at all.

Her oxygen saturation started dropping into the high 70’s which is very low since our bodies need to operate in the mid 90s.  Kayse upped her oxygen and gave her a breathing treatment. Then Lila developed a low grade temperature so they called the after-hours pediatrician number, and the doctor asked them to go to the hospital. When they arrived, the resident and attending doctors in ER wanted to have her admitted.  The ER doctors had the PICU resident and attending physicians come down to look at Lila.  In the meantime, the nurse had not come into the room yet, and the respiratory therapist gave Lila a breathing treatment and stated that her lungs sounded coarse which means she had mucous in her lungs.

The PICU doctors arrived and claimed that Lila had a left ear infection and wanted to send her on her way.  Knowing that the respiratory therapist said her lungs sounded coarse, Kayse did not accept this and explained her fears about how many of our trisomy children pass away from respiratory problems, and she did not want that to be Lila.

At that point, the doctor from the PICU looked Kayse in the eye and asked if she knew anything about trisomy 18 children and their life expectancies, and how Lila is past her life expectancy.

Obviously, Kayse was very upset and angry.  She understands more about Trisomy 18 than this doctor because she has been living it day in and day out for the last 2 years.  Not only is this an insulting question to Kayse about her understanding, but worse, it is an attack on the value of Lila’s very life.

Kayse explained that until this illness Lila has been a very healthy and happy child. She has more than proven herself, time and time again…like she should even have to prove herself to earn treatment? Is this doctor the arbiter of whose life is worthy of treatment?  Should Lila now have treatment withheld so she will simply die and go away?

Why should Lila not be offered the same level of care as any other child?  Why shouldn’t she be given steroids to help her feel better faster? Why shouldn’t they run tests? How is it OK to stick her in a room for 4 hours and never offer her Tylenol for her fever and discomfort? How is it ok that her nurse never even came in to assess her? How is Lila’s life worth less than the other children in the hospital?

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As I read Kayse’s update and what this doctor said, I could not help, but think about my own illnesses during my childhood.  I had pneumonia 4 or 5 times between ages 1-7.  My parents were visiting this weekend for my 14 year old son’s birthday so I asked them if anyone ever suggested that I was past my life expectancy or did they simply treat my multiple illnesses?

They made it clear that no doctor ever even suggested such an idea and they simply treated me as a child who needed help.  I had pneumonia more times as a child than my 5 ½ year old Trisomy 18 daughter Faith has had it.  So why was my life worth saving? Is it because I have the ability to write this story?  Lila and my daughter Faith are lovely little girls who have tremendous value because they were created in the image of God.

Lila is now resting at home with her parents.  Please pray for Lila that she will recover quickly and for her family that they will be able to rest and have peace.

LifeNews Note: Married for 16 years to Jesi and the proud father of 5 children living in Rochester Hills, Michigan; Brad Smith is a Speaker and Board Member