Couple sues hospital for keeping sick baby alive

Marie-Eve Lurendeau and Stephane Mantha made the heart-wrenching decision in 2007 to withdraw life support from their severely-ill newborn. When staff at the Montreal Children's Hospital reversed the decision, it caused the couple to sue.

CTV Montreal: Daniele Hamamdjian with details on the couple's lawsuit

A Montreal couple is sueing the Montreal Children's after their severely ill newborn daughter was put back on life support without their consent.

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CTV.ca News Staff

Date: Fri. Mar. 13 2009 10:23 PM ET

A Quebec couple is launching a lawsuit against Montreal Children's Hospital after their severely-ill newborn daughter was put back on life support without their consent.

In November 2007, Marie-Eve Laurendeau gave birth to Phebe Mantha at LaSalle Hospital.

Due to complications at birth, Phebe was transferred to Montreal Children's Hospital in critical condition and kept on life support.

Laurendeau and Phebe's father, Stephane Mantha, say doctors told them at that time that their daughter had little chance she'd survive.

If she did survive, doctors said she would probably be deaf, blind and may need to be institutionalized.

The couple was given the option to withdraw Phebe's life support and to withdraw artificial feeding.

They said they agreed to withdraw respiratory support and later, at the suggestion of doctors, to withdraw the artificial feeding.

"They say they thought that if there was never going to be quality of life for their baby girl then why let her suffer," CTV Montreal's Daniele Hamamdjian reported Friday after the parents held a press conference.

However, the hospital's ethics committee met and reversed the parent's decision without their consent or permission from a court.

After two-and-a-half months, Phebe was still alive and the hospital told the parents to take their child home or they'd place her in protective custody, Hamamdjian said.

Now, 15 months later, Laurendeau has been forced to quit her job to take care of Phebe full time.

Phebe is neither deaf nor blind. But she cannot hold up her head, sit up, or babble as another baby her age would, and she is fed through a hole in her stomach.

She does smile at her parents, though, a recent breakthrough they are thrilled with, CTV's Genevieve Beauchemin reported.

"They say they have no support and are living on one income," Hamamdjian said.

The couple's lawyer says the hospital violated Quebec law and that only the court should have the power to overrule the couple's decision.

A spokesperson for Montreal Children's Hospital refused to comment saying the matter was before the courts.

Comments are now closed for this story

John
said

The parents decision should have been respected. Because of an error by an incomptent doctor who had no experience in breech birth, my sister lost oxygen to her brain. Today my sister at 55 is still mentally handicapped. We were raised with 1 parent only and my mother had no resources from the gouvernment to have the proper care for my sister. Also my mother did not trust the institution after what just happened. Therefore as a family we did the best we could BUT we all still continue to argue, suffer, and feel the guilt why we are unable to give our sister the proper support because my mother insists she be treated like any other adult. My mother has sacrified a great deal of her life for my sister. The rest of us feel this was unfair for my mother and ourselves to be put this this postion. Soon my 80yr old nother will pass away and my sister will definitely incur a more drastic effect for the rest of her. Myself , my brother and other sister no longer have the necessary tools, skills and patience to take responsibility. My handicapped sister is 55 years old and is equivalent the Helen Keller before she learned the sign language. We have a great deal of pity for my sister but we also have a great deal of anger and disappointment at the system after so many years living with this.

amy
said

There are many holes in this story. As a former employee at the MCH and someone who still works as a pediatric
ICU nurse, I have unfortunately seen many parents struggle with the decision to remove life support (i.e. respiratory support. I have however, never heard of parents being offered withdrawal of feeds. Normally feeds will be stopped, along with IV fluids, and any other medication when it is expected that the child will die once respiratory support is removed. If the child continues to breath on their own, to not resume feeds, well then it becomes a very different ethical issue. should the parents have been consulted prior to resuming of feeds? Absolutely. And if the parents were not informed prior, then this is a gross error in communication. Yes she would probably have died had they not resumed feeds, but it would not have happened for days, and she would have died of starvation, not her medical condition.
But a "wrongful life" lawsuit??

Nelly from calgary
said

Its amazing how things sound in the media release. I would love to hear the hospitals opinion on this. Doctors have to give the worse case scenario (possibly death/blind, etc). My son was born 1 pound 1 ounce. We were told horrific potential outcomes and given the choice about how far we would go (we said 'do everything for him'). Thank goodness we did (or if we didn't, that the hospital would have chosen to do the same for his case-had it come to that). Today we have a wonderful, happy, gorgeous, intelligent 2 year old (with minor delays). I find it hard to understand why the family doesn't consider their babies survival=miracle. My son was tube fed for over a year (hole in stomach?? Its called a Gtube for goodness sake-its not that gruesome sounding!) and is now eating well on his own like a normal child.

I understand how hard it is to care for a child with disabilities, but i'm sure they could find some support. Again, they should be rejoicing that they have a baby girl to love and hold.

Dan From Woodstock, ON
said

This is awful. The parents should not be doing this. They are suing the hospital because the daughter was not left to die? It's almost like the parents do not want to deal with the girl and wish she were dead. I feel sorry for this little angel. She will grow up to know her parents would have preferred her dead.

Questioning
said

I think the hospital should have respected their wishes or why ask in the first place? I wish them well in life under the hospital's expense.

Andrea Martell
said

As I went through the comments, what I noticed most was the comments on the beauty of the baby. If the baby was ugly, and you saw what it took to take care of her everyday would you be saying different things about the baby?

Scott R
said

I think most people are missing the point. This has nothing to do with " this beautiful girl looks healthy now". I pray she is. This issue is about our legal system and our rights. And yes you can argue that a new born needs to have room for defense cause yes this case was about life or death. The parents should have been invloved with the ethics commities meeting, the parents should have been involved in all aspects of their daughters discussions pertaining to her, the doctors invloved them but not the ethics commitee, isnt that a bit hyporitical. This is about the respect, the wishes the information and the law of our country. I'll almost guarantee the doctors convinced the parents this would be the most ethical senario, What parent wants to say "yes let my child die" what parent deals with this decision on a daily bases. These parents did not want their daughter to die, and they probabily were prepared to deal with a disability. and yes the out come seems from the article to be more manageable to a certain degree health wise compared to the nightmare senario the doctors told them would most likely occur. Our ethics commities and doctors most not be allowed to play god, this case is a fight between ethics and doctors, this has nothing to do with the parents, they are the ones caught in the middle of a war of two government agencies at war over right and wrong. There is no perfect guideline for all humans to say this is right or this is wrong. So why is it that one agency can make the decision for us all. I dread the day the ethics commitee makes my decisons for me. What is that called when that happens?

Mo
said

When I first started reading this, I was quite cynical and critical of the parents' actions and thought it was simply a money-grab. However as I read the whole story, assuming it's facts are accurate, I can see it's not quite as much an issue of trying to take money as it is trying to bring up an important point of consent. Was the hospital wrong in their decision? Not necessarily, however they were absolutely wrong in not informing or involving the parents in their actions for their child, and then threatening to put the child into protective custody. Sure it's a complicated and difficult time during the early stages of caring for an infant, but to have the hospital drag you back and forth and messing with your expectations, that's a different story that they need to be held accountable for.

Also keep in mind, some of the health issues may not become as apparently until later in the child's life. It's not correct to assume that that will happen, but based on the professional opinion they were given, they have to raise a child knowing that the child may develop some life-affecting disabilities in the near future.

This is probably one of the few times where I can say someone may need to be compensated for the emotional stress and troubles they've been put through.

Kathy
said

I think it's terrible that someone would even consider removing life support from their child. I'm glad the hospital stepped in & did the right thing. Disabled children can also be a blessing & also the right to live. What's with people. A great movie on the subject is "Follow The Stars Home" put out by Hallmark.

I have to correct what another poster said about Helen Keller. She was not "dumb" in either meaning of the word. She was highly intelligent and also could speak. The word "dumb" for the word mute is as old as Queen Victoria...quite outdated.

Amine Jubaili Montreal
said

I'm a bit disturbed at some of the comments being made here.

The parents acted based on the doctors suggestions and the fact that the child had little chance of survival.

At that point, nobody knew the child would survive!

Kasey
said

Obviously this baby was meant to live. God, or whatever entity that decides the fate of every living creature in this universe had other plans for her, otherwise she would have not survived, even with the help of technology. I'm appalled at some of the comments on here saying that the hospital should have let this dear little one die. She has as much right to live as you and I, she must be given the chance to pull through. She is alive, the parents must be grateful for that at least. What parent would not?

Maria, your story is very inspiring and a prime example on how important it is to value every life. All the best to you.

Moonriver Way
said

Until you have had to face the decision of removing life support from your child, you people have no right to make these utterly discusting comments to these parents - and you should all be ashamed of yourselves. I had to remove life support from my daughter and it was the hardest decision I had ever met or will ever have to face again. To all of you who claimed they made the decision for selfish reasons are ignorant as well.

Until you have had a child die in your arms - you have no right to comment

Jessica
said

I would like to ask the parents do you honestly think your child would choose to die? I cant get over this.. You have to take responsibility for having this child imperfections and all. SHe is beautiful! Life is a beautiful miracle! And right on Eric, Gail Anne & Jen!

anji
said

The parents are suing NOT because they have a child who lived but because the hospital went against their decision. The decision was based on options given to them at the time. If you are going to over-rule the decision they make, then don't give the option in the first place.

Maria
said

Sounds to me like the parents originally did not want to have their baby suffer hence their decision to take her off life support. But now that she survived, it sounds as if the parents are bitter at the hospital because their baby is a "burden" (not physically at the stages where she should be at for her age)hence requiring extra attention. May the parents get the support that they need but only for the sake of their baby. May they be able to care for this poor innocent child who needs love and help.

J
said

This is ridiculous, their child has lived, and isnt in constant pain. The mere decision from either the hospital or the irresponsable doctor who originally told them to take her off artificial feeding is sickening.
REcently in the news was the contraversy of "designer babies" this is even worse if we are supporting any action which supports letting a child potentially die because he/she isn't "normal".
Either the article is badly written or the parents are misrepreesnted, but there is no cause for a lawsuit, and if the parents are unable to take care of this child perhaps she should be with a foster or adoptive family who would welcome her and tend to her needs.
Living on one income is not a base for a law suit.

Jim McB
said

This is a very serious ethics issue. Basically an organization has violated the right of parents to choose the lawful way ahead for their children. The organization then downloaded the resposibility for the results of its decision to the parents, and in this case, causing unecessary hardship.

This is not a political issue, the committee was made up of individuals, and each of them should be held responsible for their decision that contravened the wishes of the parents. They knew exactly what they were doing and are being paid for making decisions and accordingly they should be held liable for their actions. The award from the court should be large enough to provide care for life for the child so the parents can return to a normal life.

Jessica
said

I'm sorry but that is horrible that the parents would rather have this precious beautiful baby put to death then to take care of her..No one and i mean NO ONE has the right to take another life! Every life no matter what has the right to live. Its true there are many people living today with handicaps, etc, blindness, and they are alive. The hospital believed she is well enough to go into her parents care, then she is capable of living life. I am really shocked to be reading this.. its the ways of the world we are living today. Culture of Death. I cant believe they would rather her be dead.. she is so beautiful and a precious child of God. I and 3 brothers were all raised by my beautiful strong mother with no second income. It is possible and she can get some special care to help her raise her daughter. There are options! shame on the parents!

Eric in Montreal
said

When you decide to take on the responsibility of becoming a parent you have to assume the consequences good OR bad! If they could'nt afford it from the begining then why did they even try?

And on top of that; Just because people are born with disabilities does not make them "disposable" at the parents request... How many people with major difficutlies have accomplished great achievements in history and what would have happened had their parents decided to take the easy way out and end it at their birth's...

Everyone wants to raise the jock or the genius but god forbid they give birth to a child with disabilities...

Hats off to families like that of "Kim from Winnipeg", "BillDerBuilder" and "Rob"!

korie
said

i would be pissed if a hospital committee took away my choice as a parent.
these people were given a choice (by doctors who made their best guesstimate on the health of the child) only to have a group strangers change the outcome. if i had a child born so ill that the doctors felt the need to give me an option, then i would not have kept the child alive either.
it is about the quality of life, not the quantity of life!

i agree with the parents to sue, what type of life is it to have a tube out of the stomach to feed, to have a child who is unable to sit up, to have a child who may be unable to speak. that is torture! not only to the parents but to the child as well. they made a hard choice, to let their child die with some dignity. i feel sadness for them because now they are forced to live with a child that they already said goodbye to and it is ruining their lives.
they made a choice but it wasn't honoured.
sue, sue for a lot! i hope that you win and the hospital committee will have to think about the consequences to their actions from here on in.

Maria
said

Well, there were complications when I was born too and the Doctor came to my mother the next day and said he wondered if it was worth it to save the baby, because there was a probability of retardation. My mother's response to him was, "If she is here then she is MEANT to be here". Well, 45 years later, no disabilities and the mother of three myself. Human life is always worth saving.

Becky
said

This child sounds a lot like my son who suffered brain damage from a car accident. He is tube-fed, has seizures and is developmentally like a baby though he is nearly 8. We had to litigate after our car accident to secure a settlement to provide for his many needs. I hated to do it, but thought it was best for our child. The optics in this case make it seem that the couple wishes the baby was dead. Perhaps they are just realizing there are a lot of expenses in dealing with a severely disabled child and hope this is a way to fund them. Until you've been there don't judge.

Grigory
said

It looks to me that this Hospital is a victim in this story. Somehow I feel proud of the Hospital. People are still arguing about stem cells research but here we are talking about live child, a sick one but still alive and smiling.

TLP
said

The Ethics Committee need their heads examined! The parents had a heart-wrenching decision to make, and they made their decision after a doctor discussed their options with them. At the time, these parents did not even know if Phebe would survive in the first place. Hindsight is always 20/20.

The story now is not about the parents feeling sorry for themselves because they have to care for Phebe, it is about their rights and the law. They could have taken the easy way out and had Phebe put in "protective custody" and washed their hands of the whole matter. Instead, they are caring for her with limited financial resources, and were forced by the denial of their rights to do this. That doesn't change the fact that they love Phebe and appear to be thrilled with progress she has made.

I hope that they are successful in their legal action and the hospital that forced them into this position is held accountable.

Having a son with a life threatening medical condition and mental health problems, I very well may one day have to make the same sort of decision these parents had to make. I would hope that my family's wishes would be respected and our rights protected.

chuckie
said

Again the battle between nature and science! Who wins? I say which ever has the most positive and humane outcome. In this case science kept her alive so get the ones playing "GOD" to help raise her quality of life. They can do so by providing this little beauty with the essentials she will need for the rest of her "natural" life. Provide the parents with the tools to cope and the child with the treatments necessary to improve her condition. No money needs to change hands here. Work through it, keep her best interest in mind and all should prevale.

Allison in Ont
said

I guess some people didn't really read the article. Some people's commetns are saying "what is wrong with her?" The article clearly states "But she cannot hold up her head, sit up, or babble as another baby her age would, and she is fed through a hole in her stomach. "

The baby was expected to die and IF she were to live, would be seriously disabled the parents were told. THIS is why they chose to remove life support. by a Miracle, she did live, only because the hospital violated the parents right. Because their rights were violated, they have been reduced to one income. Thus, they are suing because the hospital made those decisions for them, not giving the parents the right to make the decisions.

Sure, the picture of the lil girls is gorgeous, we can't see the whole in her stomach... she is lying down so we can't see that she can't hold up her head, etc. I bet the family found the best picture of the lil darling for the media. I sure wouldn't try to find the worst picture of my baby to be posted on the national media...

Rob
said

Celine, my brother was without oxygen for 5:14 at birth. He lived, has disabilities, requires 24/7 special attention, is 29 years old and is an enormous blessing to everyone around him.

Jeff
said

Had this child been born 75 years ago it would not have survived a week.

Today a child like this becomes an expensive "life sentence" for the parents who had already decided to let nature take it's course.

You cannot judge this case by the smiley picture in this news story. That is not fair to anyone.

The decision to intervene
was made by the Hospital ethics committee without the parents consent.The ethics committee (i.e. hospital) should be fully responsible for the costs of that decision plus the damage to the quality of life for those parents.

Anne
said

I think the one thing all parents need to realize is that when you have a baby their are no guarantees. They should always be thought of as an amazing gift. And unfortuantley not all are born perfect. It is the risk you take when you have a baby. People need to give if more thought before they decide to have a baby and make sure they are willing to make whatever sacrifice is needed for their child.

Shelley Gaudreau
said

Just think what might be lost to the world had this child died. Think of all the disabled who have been leaders in the world.
Franklin Roosevelt. President of the US.
Steven Hawking. Mathematician.
Helen keller. Writer, educator.
Ray Charles, Musician.
to name just a few.

Kiki
said

The sad thing is years ago, this child would have died, but because we have such wonderful technology she is alive. Technology is not always the right choice.

Jen
said

God help us. We place so little value on human life.
People want to have children without any inconvenience. What is our world coming to???

This makes me wonder...how many babies, born or unborn, have died because a doctor told the parents things like there wouldn't be any quality of life, or that they would be disabled, etc, etc. And how many times would they have been wrong, had the poor child been given a chance at life??? This is so sad.

John@givephebeachance.ca
said

I don't believe it. These folks would rather have had this child die than not be perfect. She sees ,she hears,she smiles at them and may well learn to talk. But if she doesn't her life still has value. These folks are looking for a payday and should be refused.If the panel of doctors made this decision they must have been very optimistic that this little sweety deserved a chance. They probably did not make their decision on a whim.

Angela
said

From what I read, they tried to kill first by removing life support, and when that didn't work they stopped feeding her. How sad. Of course, what is stopping them now from removing the feeding tube, except for the fact that they now realise that she is a human being worthy of saving.

Terry
said

This couple has a beautiful baby girl, who obviously can communicate with them through facial expression and they are sueing for being forced to let their baby live!?! Have they lost their mind? Phebe has obviously come a long way already, and the possiblity of more improvements are hugh!
What some people would give just to have a child of their own!

Adam
said

In our culture, the light of love is going out.
I would encourage those parents to focus on the smile of their child and open their hearts to love in spite of the fact their child is not perfect. They were attempting to be spared of their own suffering, not sparing the child. Do they realize if they would win such a lawsuit how hospitals may no longer be advocates for life and many children will not receive the care they deserve because the hospital would be afraid of further litigation? Frightfully callous lawsuit!!! Please reexamine your motives parents for the sake of all disabled children.

BillDerBuilder
said

To Michelle,
I am sorry to say, but you have no idea what you are talking about. I have a 5 year old handicapped grant child who is, looking at the picture more severly handicapped than this schild.
First of all, these special children are VERY,VERY" special. I would not want to miss this child for anything. Second of all the government does everything possible to help in whatever way they can. There are all kinds of porgram and Financial supports out there.
Next time you give your opinion, do your homework first. This from a loving Grandfather.

Zoe
said

I just cant believe some of the comments:
"...Such a sweet looking angel. Although the article does not elaborate on the current health status of the child, she seems to be in perfectly good health. "
Am I looking at a diffrent article??? Obviously the child is sick, very sick.

Andrea - Regina
said

The hospital shouldn't have acted without the parent's consent. Tests during pregnancy can reveal illnesses at which point parents can opt for selective abortion. I don't see much difference between that and this situation.

It would be a terrible thing to see your child suffer - look what it drove Robert Latimer to. Not everyone has the strength to get through something like that. I don't think we should be judging these parents but applauding them for recognizing what they can and can't handle. It's easy to judge from the outside, but I'm guessing the majority of people judging don't have a special needs child.

Catherine T.
said

Ethics committees are in place for a very good reason. If the child had truly been dying, artificially feeding her would have prolonged her life some but would not have saved her as such. She was clearly able to breathe on her own or the removal of respiratory support would have ended her life right then. She must have a wonderful spirit. She is clearly a fighter whose life has a purpose. The parents should be thanking the hospital for such a wonderful gift. Suing the hospital however will likely bring in welcome cash for the practical issues of raising a child with challenges and a handy payout for the lawyer pursuing this.

kris
said

Until you walk a mile in their shoes............

Devil's Advocate
said

After being diagnosed with a brain tumor at the tender age of 16 months, my sister was given little time to live. The doctors warned my parents and their loved ones to prepare for the worst. Yet, 30 years later, she is still with us. Had it not been for those doctors at the Montreal Children's Hospital, I would never have had the chance to meet my sister. That is not to say that she does not have special needs because she does. And we meet those needs because she is a dignified human being. I would NEVER wish to turn back the clock. She is my sister and I love her. She has a deficiency which we have had to adjust to but she is also the greatest living miracle that I know of. I could not imagine life without her and I thank God every single day for saving her precious little soul. I am appalled that these parents would so choose to sue the hospital. They have been given the gift of time and rather than take on a bitter and lengthy law suit, they should cherish every moment they have been blessed with.

Angela - Guelph
said

While I sympathize with these parents, I also very much wonder how they could not look at the wonderful blessing they have been given, and thank what ever god they pray to, this life....this extension of them, was saved.

Yes this child may never be "fully" functional, but then what is "normal"?. Parenting is a tough job and even tougher under these circumstances, but I can't help thinking later in life how this child will feel about her parents suing the hospital on the argument that they should NOT have saved her LIFE!

Perhaps they should start a fund for the psychological therapy she is going to need later in life to deal with that.

It may sound like I am being flippent, but in all seriousness i am shocked at the position these people are taking...truely sad for this little human being.

Frank in Brampton
said

I wonder what these parents are going to tell this beautiful little girl or how she's going to feel when she's old enough to understand.
" oh we sued the hospital because we didn;t think you would survive. Go figure".
This little one is a gift.

Gail (Hamilton)
said

This beautiful little baby has a right to live and only God has the right to take life away as it's His gift in the first place. When parents, doctors, courts get involved to end a life, then noone is protected from those who would control life and death situations. Physical disabilities of whatever kind, can come at any time in life, and help to build strength of character (look at our paralympics). We can always find those who are willing out of the kindness of their hearts to give of themselves to assist others, and society is the better for it.

KJ in Kingston Ontario
said

Everyone who sat on that hospital ethics committee can work out a feeding and care schedule amongst themselves and take turns for the next oh -- let's say 60 to 80 years.

Should work out fine then.

Let them see the ethics of getting involved first hand and personal -- and financial.

sls
said

The hospital should be accountable for the decision it made. They took it upon themselves. This wasn't about a simple transfusion or a blood test. Not every person is equipped to deal with these struggles. Too many people are allowed to suffer against their wishes as we see in our elderly. She will most likely be so developmentally challenged that she will never even have the option to choose for herself. She may not be completely blind but it's too early to know how her vision is impaired. She cannot feed herself and is obviously so far behind on the stepping stones. The point of the story is that the HOSPITAL took the choice away from the parents after they made their decision. Now they (the hospital)has handed the parents a life sentence and is making the parents live with their decision. What ever happened to survival of the fittest?

Lindsay - Pigeon Lake, Ab
said

I think the parents should be happy and thankful that their child is alive,she may not be able to sit up on her own or babble, but does that mean her life is worth any less?

Perhaps instead of complaining that they must live on one income so that their child can be cared for full time, they should thank their lucky stars they even have that chance.

Celine - MTL
said

Lyle - you took the words right out of my mouth !

The parents are happy that she is not as unhealthy as doctors first told her they would be. They love her and care for her.

Amine Jubaili
said

My heart goes out to this family. The hospital clearly acted irresponsably and deserve the lawsuit. The child is beautifull and I sincerly hope her condition improves and that she proves everyone wrong.

ZL - Ottawa, Ontario
said

I don't undsertand how everyone is confused on the child's current condition...the article says "Phebe is neither deaf nor blind. But she cannot hold up her head, sit up, or babble as another baby her age would, and she is fed through a hole in her stomach. She does smile at her parents". I think this child is beautiful and has a very powerful guardian angel looking after her! I hope that they one day realise the gift they've been given instead of simply viewing her as a burden. To be honest I can't imagine how hard it must have been to make the decision they did, but everything happens for a reason and this little angel is living proof of that! I do agree that they should be getting assistance from with the gov't or the hospital for care/expenses.

Lyle
said

The health of the child in this story is actually irrelevant. This is the story of a couple given options about their child that most of us hope never to contemplate. They made their decision difficult as it must have been based on the information given by the doctors in the hospital but their decision was not respected. The hosptial ignored their decsions and imposed their own on them without notification or consultation. I hope this couple wins big.

Cheering for the Baby
said

What a beautiful little baby! Many facts are missing in this story, but the bottom line is, do you stop loving your child if he or she is not perfect or able to be self-reliant? If they didn't want to be bothered caring for a child, then, duh, don't get pregnant in the first place.
And whoever made the comment about the child not living a "normal" life...what defines "normal"? Does it mean that you are not allowed life if you are disabled? Not of a certain grade-point average? Not pretty? Not able to sing?
Can't recite a poem?
Where will the critertia stop if you start thinking that some people deserve life and others do not?!
Who are you to decide that?
Maybe the best thing is if they DO take the child away from her parents: there are many people who will love her
and recognize that she has great worth, and would
appreciate this little jewel.
No one can say what her "disabilities" will be in the future, or what science and medicine might be able to do to help her.
There are such advances every day...how do we know that this little child isn't destined for great things, if she is just given a chance?

James
said

@Michelle: "If society wants to impose morality, then pay the cost"

If society is imposing "morality" what then exactly was it that the child's parents were trying to impose?

Kurt
said

Michelle is right. Today, parents seem to be constantly struggling with the state to retain control over how to raise their children. Recently a child successfully sued her father because he grounded her causing her to miss a school field trip. Where do we draw the line?? In this case, a group made a decision counter to the parents wishes (whether we like the family's decision or not), and that decision appears to have significantly impacted the parents life. Since the representatives of the state interferred with a core right of the family (exercising a legal right concerning a family member), then the state should cover the costs incurred.

Celine - Montreal
said

This article is far from complete. When Phebe was born, she suffered a lack of oxygen for 37 minutes, which left her with cerebral palsy and major handicaps. The parents were told that Pehebe would be blind, deaf, have no conscience, would never walk and would be in a state of . At doctors' suggestions, the parents made the decision to take her off assisted breathing and assisted feeding, while ensuring she did not suffer. The ethics committee held a meeting, without the parents presence, and decided to reverse their decision, without consulting the parents. They were told to take the baby home and care for her or they would call child protection services.

Phebe still needs assisted feeding. She needs to be suctioned 10 times a day to remove secretions. She does not walk, can't sit up by herself and has already suffered 2 pneumonias. Her long-term development remains uncertain.

The parents are suing because the ethics committee did not respect the law and did not consult the parents. They wish to clarify the existing law in order to avoid similar cases.

Some French articles are more detailed and Radio_Canada aired a segment on this family in the show "Enqu�te".

It is easy to judge when we don't have all the facts or when we have never been through a situation ...

Doug BC
said

When all is said and done, the real issue is about who makes the decision.
In ths case,the parents chose an option presented to them by the hospital. Since the hospital then decided to make another choice,they have to pay.
This,like the decision about terminating a pregnancy before a birth,IS NOT a decision for the courts,the government,or any other institution.
As difficult as it is to understand,and as much as I may disagree with decisions some others make,it is very clear that it is not my place to impose my decisions on anyone else.Nor their to impose theirs on me.

Michael
said

This story really disturbs me. It raises questions of ethics, morality and family values.

Children sometimes are born with health issues and sometimes serious problems. This case has the optics that the parents are not prepared to look after this child because it would mean hardship on them.

The hospital obvious felt that they needed to do all they could to preserve life with problems and all. The parents, it appears, weren't prepared for parenthood if it meant hardship for them. Where is the respect for the life of their child? Does the child have any say in this or representation?

Very troubling.

Dave in Regina
said

When my first child was born 3 months early, had 9 operation in the first 6 months. She has a disability now and under social assistance.

We were told at the time her survival was not good and that we had the option.

Our option was this .. my child will have every possible chance of survival and if it is God who takes here then fine, we were not going take that chance from her.

We are blessed with a child that brings happiness to our hearts every day and also to those that she works with and meets.

Do not let the doctors control life and death, let God control it.

I am not very religious but I know that God had a reason for letting my first daughter survive.

Let nature takes its course, do not try to divert it.

From what I see in the picture, I see my daughter. This child will bring happiness and joy to any one who will meet her.

Jacob in MTL
said

Such a sweet looking angel. Although the article does not elaborate on the current health status of the child, she seems to be in perfectly good health. Look at the photo - you see she's staring at the camera and smiling, demonstrating a high chance that she's reacting to an external stimilus such as a funny sound, face... therefore couldn't be blind and def.
Yeah, the hospital shouldn't have reversed the decision - but at least consulted with parents and mention that there's hope.
The fact that the parents are suing a Children's Hospital (that is in major need of funding) and coming up with reasons why they can't care for the child...well, they should've kept their pants on!

MC
said

There never is a guarantee that your child will be born normal. That is a risk that you take when you decide to have children and have to live with the consequences. The point is she survived regardless if there was intervention or not. There are worse things in life than having and taking care of a disabled child. Though I don't dispute the hardship and sacrifices. They seem like idealistic parents who thought they deserved a healthy normal child (don't we all)and now feels they must sue the hospital to maintain their lifestyle because there is an unplanned cost to raising this special needs child? Welcome to the real world!

Linda M.
said

We have to let parents have the final say about their own children, not a committee of strangers. In this case, the committee's choice was toward sustaining life artificially. Would all these writers who are against the parents feel differently if the Committee's ruling had been for death rather than life? It is not about what the decision was, but about who has the right to make it.

Jim in Edmonton
said

This the problem when doctors and courts try to play god! Unless parents are show to be unfit by evidence them let them decide what happens to their children. Society interventions are not "always" right, most parents usually get it right if given a chance.

sami in oshawa
said

Going on what little information we have been giving im going to play devils advocate here.
The hospital had no right to challenge the disition of the parents as it is the right of the gardian of the child as to what medical treatment a child recieves and if on the sugestion of the dr these parenets decided to whith hold life suport then the hospital had no right to put the child back on. that is the key point isnt it. not that the child seems to be off life suport now as seen in the picture it is the fact that she was put back on life suport which means she needed it and probably may need other suport devices that can not be seen in the picture. I dont see anything in the article saying that they dont care about there daughter or that they are not happy that she is alive. this is not a case of the ends justifying the means. Yes there are alot of blind/deaf people who go on to lead productive lives. The point is were do we draw the line, because if the hospital can change an order given by a parent or legal gardian of a child, spouse or elderly parent then why bother asking our permission at all. No one has the right to challenge the wishes or rights of a parent with out going threw proper legal chanels. This sets a presedent at to what power hospitals can and cant have when it comes to patient care. What next they can start pulling the plug on coma patients cause they need the beds?

Tams
said

I believe that every person has a right to live, but I feel sorry for the parents that they had to be placed in this kind of situation and though they made this difficult desicion they were lied to and pretty much had people betray what they had asked them to do. I believe that the doctors should have respected their decision. Now these people have to raise the child who will always need constant attention and aid for the rest of her life

SS
said

I'll start by saying that that is a beautiful baby, and I'm glad for her survival, and I hope she can have a good life. I also wonder, since theydidn't say, what exactly is her condition now? Beaing legally blind myself, I know a person can live a good life, even with a disability. (and yes, i know it depends on the extent, etc.)

After that, I have to agree with those who think the couple has a case. Take all the emotion out of it, and you have a case of a hospital *reversing* a guardian's decision without their permission, or that from a court; then, they turn around and put this on the parents, who had probably already begun to grieve, like they were deadbeats if they didn't get on it. Since the hospital chose to make that call, I think they should at least be held to account for some aid.

Honestly, I'd really like to know more about the baby's actual condition before I could guess what the family has to go through. That would effect my opinion.

Joe - Trenton
said

First the baby is very beautiful, but the article doesn't give enough information on the disabilities of the child. The parents made the hard choice of taking the baby off of life support because of the quality of life that was predicted, and the hospital overthrew their choice instead of letting fate decide.
My sister had to make this tough choice with her first child who was in a coma due to complications and had kidney failure. Doctors predicted that she would be a vegetable if she came out of this. My sister decided on letting fate decide and she pulled through with mild brain damage. But if the hospital made the decision to overthrow her I would expect my sister to get compensation because that wasn't her choice.

Mark
said

I don't have any problem with removing the decision out of the parents hands, but the hospital and society should be prepared to pay for taking that decision away. However the story did say that the child could have been placed in protective custody, so the parents had the opportunity to relinquish their responsibility (as they tried to do early on). The parents chose to keep the (adorable) little girl, so they should now be looking after her.

Baker, Ottawa
said

I agree this article raises more questions than answers, but one thing remains clear...if the hospital did in fact violate quebec law, then they are responsible to the parents to right that wrong.
I hope that the child stuns them all and recovers fully.

Francois Giroux
said

To respons to everyone, this child is NOT ABLE to fead herself by herself.

The parent have to feed here by a "tube" connecting to her stomak !!

Alana
said

There is so much more to this story than printed. When my first child was born very premature we were asked by the doctors if we wanted them to use "heroics" to keep him alive. That meant hooking him up to machines. They also advised us that although we can make that choice, if the baby was struggling to survive they would have no choice but to assist him. We decided to leave it up to him and unfortunately he died 3 hours after he was born.

These decisions over life and death of your baby are extremely difficult. You do not have the luxury of hindsight to see if your decision was correct.

John in Calgary
said

I'd have to agree with some of the comments on here. In a large picture of the child the eyes appear to be focused on the camera so I take it she's not blind? She appears to be smiling in response to something the camera person did so was this a vocal or sight action?

Are the doctors still saying that she will have to be instatutionalized?

KJ in Kingston Ontario
said

The hospital's ethics committee should be caring for her 24/7. Plain and simple. They took over responsibility when they got involved.

island girl
said

The child oviously continued to live after life support and feeding tube was removed and apparently the parents are a bit peaved with this. The child was more robust than they thought and now they have to inconvenience themselves by looking after her at home, obviously still robust to survive without feeding tubes and life support, unavailable at home. If the parents don't want her, let someone who cares for her have her. She sounds like Helen Keller to me. Thank God no one gave up on her.

Rob
said

I have a special needs child, and the gov't helps out a lot. We receive hundreds of dollars a month from various organizations within and outside the government. And my tax return is huge every year. Sure there are sacrifices that we make, but we live in a blessed country. My daughter isn't perfect, but she's every bit as human as anyone else. I can't imagine leaving her to die for my own convenience. Suffering is a part of life, just like joy and fulfillment.

Samantha In Winnipeg
said

This Child will never have a normal life... allowing her into the world through artificial means without the consent of her parents is just wrong.

Hannah
said

I hope this couple wins. They were offered an option by the hospital and made their decision. Then the hospital turns it around without proper procedures in place! That is disgusting to do that to people.

I am sure not one moment of this has been easy for this couple. Now they have this child they have to care for 24/7 for years and years and years to come. Winning this suit against the hospital will make it a little easier for this couple to do this with love as it will help to ease a bit of the stress.

The hospital should have had their ethics committee meeting before they spoke to these parents about their options.

Rick in NB
said

Helen Keller was deaf,dumb and blind. Yet Annie Sullivan saw something in her. And we all how that story went.
Annie Sullivan was also institutionalized by people who could not be bothered with her.

NBer
said

un freaking believeable....what is this world coming too!!!

Kim
said

Perhaps God has other plans for this child. Sometimes people with disabilites become inspirations to the rest of us.

Anyone ever heard of Helen Keller?

Tracye - Alberta
said

So this little girl (her picture is amazing) is still alive then?? I am not sure thru the article what is wrong with her - her picture looks fine but it was taken in 2007 - is she disabled, what is wrong with her?

Kim in Winnipeg
said

Wow, I am in shock right now.
My husband and I have raised 3 children, now in their teens. We have done so while only having one income. We also have a child who needs special attention which is NOT covered by our health system. So WE paid for it, and continue to do so.

Chiara Smith
said

Yes, I would agree the ultimate decision was of the legal guardians to remove the life support etc and it wasn't right that the hospital put the baby back on life support. But just look at how adorable the baby girl is and those eyes. How could you going through with courts etc, when the baby's eyes just melt your heart. I realize it's A LOT of work and hard but she's a human being also. GOD Bless this little girl and give her courage and strength to continue to strive through life.

Michelle
said

I hope the family wins. Not because I agree that she should have been left to die but because any society that takes these decisions out of a parent's hands should have to fully support that family in caring for that severely disabled child. The supports in place to help families like this are disgustingly in short supply. If society wants to impose morality, then pay the cost!

Patricia
said

What a beautiful child! There is no mention about the extent of her disability or whether one even exists. The couple is now upset because they must live on one income. What were they planning to do when they decided to get pregnant? This little girl must be cared for with all the necessary supports needed if there is disability and the parents should just go and fly a kite!

Tori
said

In the picture shown, this child looks like the picture of health.

I guess my confusion is coming from the fact that the child survived. Is not on life support in this picture.

Are they suing because the child originally thought to die ended up surviving? Or are they suing because the child who is not perfect requires care?

The article says that the respitory support was removed first. Later artificial feeding.

Does that mean the child was able to breathe on her own?

I would like to hear the hospital side of the story.

This article has raised more questions and given us very few answers.

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