Jump to content
IGNORED

Parents to 5 year old: "hospital or heaven?"


pnwgypsy

Recommended Posts

The mom posted the full conversation with her daughter on the blog- http://juliannayuri.com/2015/07/15/dont-worry-god-will-take-care-of-me/ 

 

I don't know what could be done differently in this case. It's just a sad story all around.

I don't think the Faux news talking heads, or anyone of the online commenters who are trashing the parents, know what they would do if, god forbid, they were in these parents' shoes.  (not talking about FJ'ers or anyone else who disagrees with their decision; everyone has a right to their own opinion, and even to change that opinion when faced with reality)

The mom posted the full conversation with her daughter on the blog- http://juliannayuri.com/2015/07/15/dont-worry-god-will-take-care-of-me/ 

 

I don't know what could be done differently in this case. It's just a sad story all around.

I don't think the Faux news talking heads, or anyone of the online commenters who are trashing the parents, know what they would do if, god forbid, they were in these parents' shoes.  (not talking about FJ'ers or anyone else who disagrees with their decision; everyone has a right to their own opinion, and even to change that opinion when faced with reality)

Link to comment
Share on other sites

What a horrible situation - this would be my worst nightmare as a parent.  If I were in their situation, I would probably be doing the exact same thing.  I know I would not want my child to suffer, knowing that putting my child through that suffering would only mean prolonging her life a short while.  Poor little girl, and I grieve for the parents. 

Link to comment
Share on other sites

I'm a newb using tapatalk which has been problematic since the site upgrade, so I didn't know this thread actually posted. I thought I might not have permission to do so yet.

How am I not surprised faux news has a misleading headline/article.

Link to comment
Share on other sites

I'm a newb using tapatalk which has been problematic since the site upgrade, so I didn't know this thread actually posted. I thought I might not have permission to do so yet.

 

How am I not surprised faux news has a misleading headline/article.

 

You may want to ask on the Tech Support forum about Tapatalk.  There's also a new mobile thingy that is working much better I hear.  Being a Luddite I can't help you, but our wonderful Tech Support can.  :)

Thanks for posting this, and WELCOME to FJ.

Link to comment
Share on other sites

I guess it is in that case the choice of a hospice or home. (we have a hospice close by (next town or so) they do charities calls every now and then

Link to comment
Share on other sites

The family is doing in home hospice. The family is receiving both medical and emotional support including a grief counselor for both Julianna and her brother.  It looks like the family has gotten creative in its ways to keep Julianna stimulated. That has to be hard when she can not explore the world.

 

I hate the fact that the news sources keep implying that the family is not getting any treatment. They are doing hospice and getting both emotional and medical support.

Link to comment
Share on other sites

The family is doing in home hospice. The family is receiving both medical and emotional support including a grief counselor for both Julianna and her brother.  It looks like the family has gotten creative in its ways to keep Julianna stimulated. That has to be hard when she can not explore the world.

 

I hate the fact that the news sources keep implying that the family is not getting any treatment. They are doing hospice and getting both emotional and medical support.

it annoys me when people imply palliative care isn't actually care

Link to comment
Share on other sites

The family is doing in home hospice. The family is receiving both medical and emotional support including a grief counselor for both Julianna and her brother.  It looks like the family has gotten creative in its ways to keep Julianna stimulated. That has to be hard when she can not explore the world.

 

I hate the fact that the news sources keep implying that the family is not getting any treatment. They are doing hospice and getting both emotional and medical support.

it annoys me when people imply palliative care isn't actually care

Same here. Palliative care is care, mostly making sure the person is comfortable in their final days. Whether the hospice care is done at home, or in a center that is designed to be comforting, there's medical care for the person, and emotional support for the families.

Link to comment
Share on other sites

Longtime lurker posting here.  

I am the parent of a profoundly disabled and medically fragile (but presently stable) child.  My son is now 16 and while not as medically complex as Julianna, I can relate to the end-of-life conversations that will have happened for this child.   For the record my son has similar physical limitations to Julianna, minus the breathing issues (i.e: he also uses a feeding tube).

It is hard for parents of able-bodied, "normal" kids to understand the anticipatory grief we parents live with on a daily basis. We know our kids are expected to die young.  It sucks.  If my son gets a bad pneumonia it could end his life - though for us it is not a "given" and for that I am grateful.  I have known this for his full sixteen years.  In our case, because my son's respiratory status is less fragile, we have been able to keep his health (and resulting quality of life) more stable.  In Julianna's case, because of her frail respiratory status,  a bad virus will end her life.  It is fact.  I know kids like her.  

Often kids like my son and Julianna experience this long period of protracted suffering and a downward spiral of poor health and quality of life leading to their death because it is so hard for all of us to allow a child to die without intervening with all possible medical options.  Often the only thing this does is prolong suffering for both the child and the family.  I have watched it.  It is awful and I will NOT allow that to happen to my son.  

As the doc in the article said, there are some situations that are not, and should not be, open to debate.  Like chemo for leukaemia.  But then there are others where all we are doing is perpetuating suffering.  Most parents of very medically complex children are more afraid of their child's suffering than their child's death. We parents of medically fragile kids live with death as an eventuality, something that is lurking in the background of our parenting journey.  I do not, EVER, wish for my child's death, but I have made peace with the fact that it will likely happen someday.  When it is clear we have reached that part of our journey as his parents I hope that I have the same courage and grace as Julianna's parents.

I agree that in this case this situation is simply excellent palliative care that has been offered in a way that a child can understand.  We need more models of care like this where the child can influence their quality of life and limit their suffering in end-of-life decision making.

Link to comment
Share on other sites

This is really sad. Is CMT genetic? I'd like to see genetic testing (either via IVF before conception, or very early in pregnancy) become a usual thing to do, so that this doesn't happen to other children, or put such a strain on parents

Link to comment
Share on other sites

This is really sad. Is CMT genetic? I'd like to see genetic testing (either via IVF before conception, or very early in pregnancy) become a usual thing to do, so that this doesn't happen to other children, or put such a strain on parents

it is genetic. I read on her blog that her father has a mild form of CMT. They both have a form that did not show up on genetic testing.

http://juliannayuri.com/2015/10/04/i-cant-walk-but-i-can-talk-cmt-simplified/

Link to comment
Share on other sites

This reminds me of the painful but very thought provoking "Donna's Cancer Story" that really changed how I think about treatment, childhood cancer, terminal illness, and hospice care. It sounds like in this case with the young girl with CMT, the parents decided to do what Mary Tyler Mom of Donna's story did and followed her daughter's cues about how she wanted to live her life up until her death. 

Link to comment
Share on other sites

This is really sad. Is CMT genetic? I'd like to see genetic testing (either via IVF before conception, or very early in pregnancy) become a usual thing to do, so that this doesn't happen to other children, or put such a strain on parents

The problem is there are so many genetic diseases that you can't test for them all. So which ones do you test for? CF? Muscular Distrophy? Hemophilia? Osteogenesis imperfecta? If you can only test for a few, what is the criteria for making the testing for that particular issue standard - a life expectancy only until 5? 10? The potential suffering even if the person might live well until adulthood? Testing before implantation for IVF cases to my knowledge is typically only performed if there is a known issue. The problem is just too big and complex to be easily resolved, if even possible. 

Unfortunately, genetic mutations that cause these issues are unpredictable, and to a large extent unavoidable in the population as a whole. Which means a lot of suffering for children and their families. Julianna is fortunate to have her parents who are giving her some say, even at her age. I am reminded of Talia Joy, who was granted the ability to decide to end treatments when she had another relapse and also a second type of cancer in addition to the original. She was wise beyond her years, as I imagine Juliana is from the articles I've read. They had no say in their situation, but they should have at least some say in what happens to them as a result of their disease. 

Link to comment
Share on other sites

The father's is so mild, that they only found his in the context of investigating Juliana.  The mother is a doctor and as CMT started looking like a possible diagnosis, she remembered that her husband has slightly odd feet and they investigated further.

To put father's form of the disease in context - he flew planes for the US airforce, and stopped not because of illness but because he wanted to care for his daughter.

He has it, he passed it on too her, but he has it so mild that its had no physical impact on him.

 

Cnn have a two part article on it - be warned it made me sob buckets.:crying-yellow:

http://edition.cnn.com/2015/10/27/health/girl-chooses-heaven-over-hospital-part-1/index.html

Link to comment
Share on other sites

I signed up after being a lurker to reply to this because it is close to me.

I can totally understand the parents wishes after reading the article, no one should have to live in constant pain and I wish them all the best.

I have CMT, my father (and grandfather) were only diagnosed after I didn't meet milestones. CMT is extremely variable, however the situation in this article is unheard of as far as I am aware. CMT does not normally reduce life expectancy and if there are respiratory issues it is usually due to anesthetics since they can react badly for people with CMT.

As the articles states they haven't been able to match either her, or her father with a recognised type of CMT, so no genetic testing would have helped prevent this situation, and since CMT is just a broad diagnosis meaning it is an issue with peripheral nerves it is also completely possible there are other conditions at play, or it is a new mutation. CMT can be genetic, but there is also random mutations without effected parents.

I would just hate for someone to come across the article or threads like this when they, or a family member have been freshly diagnosed.

Link to comment
Share on other sites

Welcome to FJ.  I hate the way this has been reported. The articles make it sound like the parents have decided to not get any medical help. 

Link to comment
Share on other sites

  • 7 months later...

I am sad to report that Julianna Snow has died.  However, the story sounds as if she did so on her terms and her family is at peace with the decisions they made.

http://www.oregonlive.com/portland/index.ssf/2016/06/julianna_snow_who_chose_heaven_over_hospital_has_died.html

Be advised - some of the comments are callous and ignorant.

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.



×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.