Posted on 09/30/2014 9:42:41 AM PDT by Morgana
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.
Are the Obama Flu and Obama Polio caused by the same virus?
If that was my child I would get her to Chicago,Cleveland,the Mayo Clinic or New York ASAP.Having worked in a major,and well known,hospital taught me many things...one being that the more dangerous and/or rare the illness the greater the need to get the patient to a major hospital.Small and medium sized hospitals are usually fine for simple pneumonia or appendicitis but they’re *terrible* with uncommon conditions.
prayers said for Lila and her family.
May the Lord shake some conscience and compassion back into those doctors!
This is not “futile” treatment; this is care for a little girl in an early and treatable stage of illness.
None of us leave the world alive.
No. But he now answers to those who are.
********************************
Poor baby. This alone is cruelty, and they know it.
Author is part of an organization called Save The 1 and they have a blog...
My nephew has Williams Syndrome and when a baby had a life expectancy of 3 at best. He is 25. Was taken care of at Children’s of Philly, not perfectly but there are always unknowns (allergy to anesthesia lead to a stroke) and parents are into natural foods and vitamins.
I pray for your child above all else on this topic.
“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.”
The perfect answer was to ask “What are you suggesting then?” Whenever somebody pesters me with a euphemistic response I challenge them on the spot to be direct. Most of the time they in fact are and it’s not so bad, some of the flakey ones — like this guy sounds like — back down and ‘don’t go there’.
But also in your post and the quote I provided from it, it doesn’t sound like what he said was actually bad. Clearly the Dr. is confusing ‘life expectancy’ with ‘survival chance’ with treatment, but it seems honest enough type of mistake a ‘straight shooter’ might make.
Unless of course you were just being polite and didn’t quote him exactly.
That bastard would not say that of people with AIDS who keep injecting and spreading, would he?
Cowards.
Isn’t that what Rick Santorum’s child has?
Yes.
We need the name of the doctor who said this.
It needs to be made public.
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