Wednesday, October 31, 2012
Monday, October 29, 2012
Answering your question on withdrawal of fluids in newborn
"Is it routine to withdraw fluids and nutrition from infants in the NICU? That is what we were offered for our son in hospital after we removed the ventilator and put a DNR on his chart and waited for him to die. He didn't die. He didn't need a g-tube, he was able to breastfeed and get enough nutrition for himself yet it was offered to us to just stop feeding him orally, give him morphine for the pain and let him go. Is this sort of thing common?"
I contacted Dr. Jonathan Hellmann, who is clinical director of the neonatology unit at the Hospital for Sick Children in Toronto for clarity on how to answer this question.
Dr. Hellmann authored a paper earlier this year about parent perspectives on withdrawing intravenous fluids in newborns with severe neurological injury or disease where the decision to stop life-sustaining medical treatment such as ventilation is made (Withdrawal of artificial nutrition and hydration in the Neonatal Intensive Care Unit: parental perspectives). None of the newborns in the study could safely be fed orally.
According to the study, in addition to requiring the full support of the parents and the senior medical staff and team, the practice of withdrawing artificial nutrition and hydration requires "the clear demonstration of the inability of an infant to safely tolerate oral feeds (oral feeding was regarded as routine care even in those in whom it took many hours to achieve a satisfactory intake.)"
Given this criteria, I asked Dr. Hellmann whether withholding milk from a baby who is able to breastfeed -- as reported above by the parent on BLOOM -- fell outside the practice of withdrawal of artificial fluids and nutrition.
Dr. Jonathan Hellmann: Your interpretation is correct. Only if the feeding is regarded as medical treatment i.e. requiring tubes, IVs, lines etc. is it ever our practice to possibly raise the issue with parents of a profoundly affected infant. If the child is able to tolerate feeding it is absolutely not acceptable to consider withdrawal of hydration and nutrition. I am extremely concerned that individuals might interpret our findings without every effort being made to feed even small sips, and only when it is unsafe to potentially raise the issue. It is certainly not common practice here and requires very careful consideration in every case.
I hope the parent who posed the question above sees this blog and lets us know if she has more questions.
Sunday, October 28, 2012
Thursday, October 25, 2012
A toileting taboo: Kids and incontinence
Pee and poop. We all do it. But what if you couldn’t control when you ‘went?’
What if catheters, timed toilet trips, medication, diapers and sometimes surgery couldn’t guarantee that you wouldn’t have an accident?
How would you keep it a secret?
How would other kids treat you if they found out?
Urinary incontinence and how it impacts children socially was the focus of a qualitative Holland Bloorview study of 11 youth with spina bifida aged six to 18 and their parents.
“No one can tease the kid in the wheelchair, but it’s not ‘normal’ to be in a diaper when you’re eight-years-old,” said lead researcher Amy McPherson, recounting what children told researchers in interviews about how other students responded to their incontinence.
Researchers found that about half of the children were bullied – with a couple being completely ostracized – and most had no close friends. “One parent said she hadn’t organized a birthday party for her child because she didn’t think anyone would come.”
Two children who had learned to self-catheterize at an early age did have good friends and participated in typical childhood activities like sleepovers and camp.
But telling their friends about it was nerve-wracking, Amy said.
“Even the kids who functioned well said, ‘Well, I decided to tell my friends before they found out and ran away screaming.’ And even those kids didn’t share ‘the whole story.' They just told their friends they do things a little differently.”
Toileting in our culture is one of the last taboos, and for students, having an accident or a partially-visible diaper was “social death,” Amy said.
One of the themes that came out in interviews was that incontinence marked youth who wanted to be viewed as normal, and was a barrier to being accepted, having friends and going out.
“Because of the stigma, and the fear that others may find out, these students don’t often put themselves out there and instigate friendships,” Amy said. “It’s not something you want to talk about. You have to keep it hidden.”
“These kids feel stress to keep up a façade,” said researcher and ambulatory care nurse Julia Lyons. “Their goal is to fly under the radar, ‘for no one to notice me.’”
Ironically, parents who were interviewed separately from their children often began by insisting that their child was a normal and regular kid. "Then as the interview went on, it became obvious that their child didn't have friends and wasn't participating in activities, sleepovers, sports," Amy said.
Another theme was independence. “A lot of parents wanted their kids to take ownership of the incontinence issues and felt they needed to learn to do it themselves,” Amy said. “There were still 16- and 17-year-olds who weren’t catheterizing themselves. They used a diaper and had mom do their personal care.”
However, parents sometimes minimized just how hit and miss managing incontinence was for the youth.
“There isn’t a magic bullet for this,” Julia said. “It’s not like if you break your arm they give you a cast. These kids have to do a combination of catheterization and taking medications to allow them to hold more urine and using diapers and pads and even then it’s not 100 per cent effective.”
Drinking a can of pop, participating in gym class or simply being nervous can erase children’s vigilant efforts to stay dry. “The system is so tenuous they’re walking on egg shells on the best of days,” Julia said.
However, parents tended to expect perfection.
“One parent said: ‘She fell off the wagon’ – about an eight year old!”
The researchers noted that some students who did self-catheterize still wore a diaper as a security measure and were reluctant to let it go. They live with the fear that "tomorrow their routine won’t work," Julia said.
School accommodations – such as having students use the staff washroom where they can store their supplies – often reinforced the perception that they were different.
Typically children’s incontinence wasn’t shared with the class, but the student would have a signal to let the teacher know they needed to go to the bathroom, and would be taking longer than expected.
Unfortunately, some of these signals were stigmatizing: “In one case, the Grade 5 student had to place a giant, city-issued traffic cone on her desk to say she’d be back in 10 minutes,” Julia said.
Families reported a lack of incontinence products that were discrete and effective.
The researchers note that negative stereotypes about “having a leaky body” don’t just exist in childhood. “Adults who are incontinent are less likely to have meaningful employment and romantic relationships, so there are long-term implications for children with incontinence,” Amy said.
A larger study is needed to better identify what promotes continence and social acceptance in children with spina bifida. One tool to support children may be an online group where children who are going through the same thing can share their experiences.
This small study was launched because clinicians heard frequently that children with spina bifida and incontinence were bullied.
Dr. Paige Church and Nicole Fischer were the other researchers on the team. Their findings will be presented in a poster at the Bloorview Research Institute Symposium Nov. 13 and submitted to the journal Disability and Rehabilitation.
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Special Olympian fires back at Coulter
Wednesday, October 24, 2012
Don't show your ignorance Ann
My British dad used to use that phrase: "Don't show your ignorance."
And in the context of Ann Coulter (who tweeted the above Monday during the final debate in the U.S. presidential election) it fits like a glove.
I'm so glad I don't live in a country where ignorance and hatred are accepted as "free speech."
The media describe Ann as a Conservative pundit.
However, a pundit -- "a learned person" who "makes comments or judgments in an authoritative manner" hardly describes someone whose best criticism of the United States President is to call him "the retard."
There isn't anything learned or authoritative about tweeting a schoolyard taunt that has been used to dehumanize people like my son for decades -- a word that isn't even used in medical circles anymore.
I took a quick look at Ann's website, and it spews hatred for marginalized groups, so I guess it's not surprising that she'd add a slur against people with intellectual disabilities to her arsenal.
What does surprise me is that Mitt Romney, the Republican contender for the U.S. presidency, would not publicly call her on it.
With friends like Ann Coulter in your camp -- who needs enemies?
There were a couple of news outlets that did report on just how offensive, infantile and "unfunny" she is.
Ann Coulter's 'retard' tweet says more about her than her politics (Leave it to Canada's national newspaper to bring some sense to the topic).
CNN has this excellent piece: Ann Coulter's backward use of the r-word
My friend Ellen Seidman, at Love That Max, who has already done so much to call for respect for our children was forced to devote a blog post to Ann's antics.
At this poll in the British Guardian newspaper, 84 per cent say the comment is offensive. And in response to "Is Ann Coulter's comment appropriate?" in this Toronto Sun poll 68 per cent said "no way."
So yes, I do call on Mitt Romney to weigh in on Ann Coulter's use of the word "retard" to describe President Obama.
Mr. Romney: Is this the kind of language and theatrics you encourage in your own five children?
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