Update on Annie: withholding of treatment for cognitive delays

Anniesmom · #1 03-31-2009, 11:07 PM

Hello everyone,

Perhaps some of you remember me from earlier postings in which I was seeking families with children with traches who have cognitive delays who are from Canada. I have yet to find any.

Our government (Ontario) program for at-home cardio-respiratory monitors specifically excludes children who have pre-existing conditions (such as a genetic condition) and my feeling is that this likely "sets a tone" within the children's hospitals regarding the offering of treatment such as tracheostomies and other, more complex surgeries.

I remain very concerned about what appears to be the existence of covert, discriminatory practices and policies. For example, we should have a number of children living with my daughter Annie's genetic condition based on a prorated calculation of the population from the number of children in the United States. That quantity does not exist. In fact, there is only one child alive in all of Canada as far as I have discovered and her parents had a huge battle to obtain life saving surgery for her. It helped that one parent was a doctor.

Here, they tell their story. http://www.youtube.com/watch?v=UNzJt...eature=related

Annie was featured in an article from our Canadian Medical Association Journal that was about the concerns related to prenatal genetics.
http://www.cmaj.ca/cgi/content/full/180/7/705

I believe that public health care is detrimental to children with disabilities. It is true that the medical care is "free" but that does not mean that all children are provided with full treatment. If their are "shortfalls" or someone takes issues with the witholding of care, there is no accountability in the system. The life of a disabled child is almost valued at almost nothing, the cost of litigation is very high and the cost of their medical care can be very great.

We certainly did not want futile care that would cause our daughter to suffer unnecessarily. We simply wanted a treatment plan that was in her best interests and unique to her (not a genetic label).If treatment was not in her best interests, we wanted her to have a dignified death. Really, it should have been simple.

I am preparing to "retire" from my advocacy. I have worked very hard to establish some sort of protection in the system for children with disabilities (there is virtually none) but I now see that the problem is too big for one person to make a difference.

All the best to all of you and your precious children.
Barb Farlow
www.anniefarlow.com

kharmasmama · #2 04-01-2009, 12:16 AM

Good luck! Living in the United States, Canada's health care system seems like a dream: never having to pay for anything, socialized medicine, etc. However, socialized medicine gets romanticized a lot. While paying for my daughter's costly conditions sometimes makes me bitter, I'm glad that treatment is available in the first place. Sounds like there are ups and downs to Canada's system that Americans really don't think about. I'm glad your child received the treatment she needed

Livi's_mama · #3 04-01-2009, 12:20 AM

I'm so sorry for your struggles.

I do want to thank you for sharing your opinion and experience with such govt practices.

alizesmom · #4 04-01-2009, 04:18 AM

Barb, it's good to hear from you again. I am sorry that you have been unable to facillitate the changes you wished to make. At least you cared enough to try.

Karen

My little figther · #5 04-01-2009, 07:03 AM

I am sorry that the changes you were trying to accomplish did not happen but you can tell yourself that you cared enough to do something about it. One person is sometimes not enough but someone else will come along an pick up the fight again and eventually change will come.

Michelle

JWorthington · #6 04-01-2009, 08:23 AM

Barb, good to read your story and make people aware of this. I'm sorry you've had to struggle so much. We also have a socialised healthcare system in the uk and sometimes it fails those who need it most. We have several ongoing issues (which I won't go into here) with Sam and the care he gets from various agencies at the moment. I sometimes feel that these people simply do not know what to do with him but won't say that - he is being failed by the so-called professionals in many areas right now, when other children, with similar issues, but not so complex medically, get tons of support (sorry, didn't mean to go on

)
It is very hard to influence change, and one person can't do it alone. Glad you tried

Julie x

Kate · #7 04-01-2009, 09:25 AM

Quote:

Originally Posted by Anniesmom

I am preparing to "retire" from my advocacy. I have worked very hard to establish some sort of protection in the system for children with disabilities (there is virtually none) but I now see that the problem is too big for one person to make a difference.

All the best to all of you and your precious children.
Barb Farlow
www.anniefarlow.com

Oh Barb, you have done SO SO SO much. Again I'll say it-Annie I'm sure is so proud of her mommy. You have been such a great advocate for all of those w/disabilities and especially our children with t13. I do hope that we can meet someday-so if you are ever in the midwest let me know and if I'm ever in your neck of the woods-expect a call.

I, like you I'm sure see Annie in Mitchell-and know that we are so very fortunate to have found the care we have. Lots of hugs

I know how hard you have worked and don't believe for a minute that you haven't made a difference-you have.

T-bone · #8 04-01-2009, 09:58 AM

Hi Barb,

I am from Ontario. We live in Ottawa. My daughter spent her first 4 months at CHEO. She had a trach placed at 9 wks of age and she uses a ventilator while she sleeps. She also has a pace maker and a learning disability.

I am so sorry for all that you have had to endure and for your loss of Annie.

We are very fortunate, we have never encountered any type of neglect with regards to Abby's care. The only difficulty we are faced with and most familes all over face the same thing, is with the lack of qualified nurses.

Our government (Ontario) program for at-home cardio-respiratory monitors specifically excludes children who have pre-existing conditions (such as a genetic condition) and my feeling is that this likely "sets a tone" within the children's hospitals regarding the offering of treatment such as tracheostomies and other, more complex surgeries.

I am not sure what you mean by this. Abby has a genetic condition and she gets all of the services that I know of.

I wish you all the best. If you want to talk with me, please feel free.

Tess

Anniesmom · #9 04-01-2009, 10:34 AM

Thank you for your messages and support everyone. I really appreciate them.

Tess from Ottawa, I wanted to address a few of the issues that you raise.

Your beautiful daughter's condition, of which I am well familiar, is not associated with serious cognitive disabilities. That is the big difference. In the same way, Downs Syndrome is still an "accepted" condition although a pediatrican at the Ministry of Health who develops rationing strategies to reduce wait times for pediatric surgeries told me that infants with Down Syndrome get the "gold treatment....for now"

The restriction on cardio-respiratory monitors was related to the government assistive devices programs and it specifically related to infants who suffer apnea. In bold letters, the document stated that if the apnea was caused by a "pre-existing condition" the monitor would not be provided. I am pleased to send you a copy if you like. Children like Annie routinely suffer from newborn apnea.

I can well imagine that you could not relate to my situation because I cannot imagine why anyone would withhold care from your daughter. Her life span is likely to be normal.

My daughter might not have walked until she was 4, and then with a walker. She may not have been verbal. But we loved her, accepted her and valued her life. We spent a lot of time observing and coming to know special families with children with severe disabilities and we saw a quality and beauty in their lives (despite the challenges) that we had never seen before. It was not our place to judge Annie, only to love her.

Children like Annie rarely live past childhood. There is no guarantee of tomorrow and the end can come quickly, without warning. These children teach us that life is such a gift and to live everyday to the fullest.

Here is a story about a child with a very similar condition, called trisomy 18. The prognosis and disability is almost the same.
http://www.youtube.com/watch?v=Q6kf6JJnhFg

If you watched the video with the man talking about his daughter (in my original post) and the attempt by the director of the NICU to end her life, you would be surprised that his daughter is now 7, walking independently and a special happy little girl that is dearly loved by her family. He has made an incredible effort to keep the hospital informed of her progress.

I think that what is important about Annie's story is that so many lines, related to parental consent, covert withholding and the strong suspicion of involuntary euthanasia were crossed. Annie was not brain dead by any means. She was not suffering. We had a great relationship with the doctors and were omnipresent at the hospital; day and night.

If this happened for Annie and us, with no excuse whatsoever, the question is, who is next?

Barb

Alethia · #10 04-01-2009, 11:13 AM

Barb, you sound like you've rattled a lot of cages so although you feel like you haven't done the job you set out to do, you've probably made the way easier for the next person/people, and they WILL come.

As for this happening in a "socialised" medical setting, every system has its flaws and penny pinching somewhere along the line. In private systems, the insurance companies deny any treatment they can get away with, and in socialised care treatments are generally only used if their clinical effectiveness has been demonstrated so it's a bit of a bummer if you need some experimental treatment - a situation my son is in personally.

Well done for all you've done.