Poppi's Rule

Alyssa - posted on 03/10/2011

Its not an official petition. All it can do is raise awareness for parents so they can assert their wishes to be part of the decision to resuscitate before 24 weeks. (after 24 weeks they are all attempted to be resucitated)

There is no "law" as far as I can find.

Every baby is assessed at birth by doctors past 20 weeks but only if it is deemed over 24 weeks will they administer lung steriods if there is time during labour.

SO...effectively Poppi's Rule ALREADY exists. It is up to doctors to make sure they follow the guidelines in that they DO involve the parents. This is where Poppi's Rule might be effective, education that parents have a right and doctors know that we know about it.

Poppi's Rule could be set up much clearer though. But alas, it is just a FB group.

User - posted on 03/10/2011

Everyone keeps mentioning the law. What is the law? Is there anyone that can name this law (if there even is one)?

I believe that the debate should not be about gestation age but rather how the baby is when born. Eg. breathing on its own, strong heart beat, moving limbs, etc.

I find it hypocritical that a person can be kept on life support and all medical treatment given regardless of the quality of life outcome, however, these babies are given no chance at all.

User - posted on 03/10/2011

Everyone keeps mentioning the law. What is the law? Is there anyone that can name this law (if there even is one)?

I believe that the debate should not be about gestation age but rather how the baby is when born. Eg. breathing on its own, strong heart beat, moving limbs, etc.

I find it hypocritical that a person can be kept on life support and all medical treatment given regardless of the quality of life outcome, however, these babies are given no chance at all.

Chelsea - posted on 02/20/2011

I think the new petition is much more realistic, but I'm not sure I still get the point of the petition. Is there an actual law right now that states that viability of a baby starts at 24weeks?? I thought the guidelines for when a baby is viable is something that's decided by each individual hospital....? and I have heard of some hospitals that have tried to help 22 weekers already. So I'm just confused about what they're trying to get done. Also, is it an official petition?

Alyssa - posted on 02/20/2011

sorry the link won't work...but next time your on FB just search for Poppi Rule Event

Alyssa - posted on 02/20/2011

A little update on the Poppi Page. The original petition was deleted without authorisation from the family (long story) but they have started another one which is aimed at awareness for 22week premmies and upwards. They need all the help they can get to get the numbers back up.



I am pleased with the new petition, much more realistic. Hope you sign!!



http://www.facebook.com/#!/event.php?eid=111746692235919

Laura - posted on 02/19/2011

I cried reading the stories on FB the other night. And its not easy to make me cry, but it was heartbreaking. I would not wish it on my worst enemy.

Chelsea - posted on 02/18/2011

My heart goes out to this woman and anyone who has lost a child...it's a heartbreaking story. I am a preemie mom but, I am not a supporter of the petition. I do agree that parents should have some say and if a child is breathing and showing signs of life for that long then they should try and do something. But in their petition I read that they want life saving measures to be taken for any baby over 20 weeks (if I'm understanding it correctly). I just don't agree with that. My daughter was a 26weeker born a 1lb 4oz...I didn't even ask what she weighed the days following her birth...I was too scared to know since she most likely went below the 1lb mark. Even at 26 weeks my daughter was on a vent for a month and had many issues in her 110day nicu stay. I don't think they even have equipment small enough for a 20 week baby, I feel like some logic has to be used here...doing this to a 20 week old would be torture. Just the thought of having to find a vein to put an picc line in makes me feel sick...their skin would be like tissue paper and rip. And not to mention the heel pricks multiple times a day. My daughter's skin was pretty fragile, we were not allowed to touch her for a few weeks, and as I said she was a much older preemie. It is a very sad situation...but medical technology is just not able to handle these extreme premature babies right now. I could possibly see raising the age to 22weeks and I do believe parents should have a say, but I also think the doctors should be involved in the decision as well...the neonatologists I've met are very passionate about their work and doing everything they can to help these babies...it's not like they just can't be bothered to save certain babies just because the have not reached "viability", they know what preemie babies have to go through and I think their opinions are actually very valid. Also, my hospital (and I know many hospitals) do not believe viability starts at exactly 24 weeks...most will try to help 23 weekers and I've even heard of 22weekers.

Alyssa - posted on 02/15/2011

http://www.ranzcog.edu.au/publications/o...

Melissa - posted on 02/15/2011

Alyssa I dont think they are...there were many babies where they breathed and cried for 1 hour or 5 hours they begged them to help they refused

Alyssa - posted on 02/15/2011

Sorry Anonymous...that was not a dig at you. I was just under the impression that babies weren't resuscitated before a certain age but it seems they are in Aust. after consult with the parents?

Alyssa - posted on 02/15/2011

So after I have looked into this it seems I can't find any information on a definitive age of viability but I did get this from here http://www.reproductivechoiceaustralia.o...
FETAL VIABILITY
• Despite medical advances, fetal viability in the late second trimester remains very low and outcomes of
survival are extremely poor. Since 1990 there has been no improvement the survival rate of infants born
before 24 weeks.
• Despite medical advances, fetal viability in the late second trimester remains very low and outcomes of
survival are extremely poor. The British Association of Perinatal Medicine regards the minimum threshold for
viability to be at 22- 26 weeks - this is known as a “grey zone”. There is very little chance of survival at 22
weeks, survival at 23 weeks is very rare and still low at 24 weeks. Infants delivered prior to 26 weeks of
gestation face a high risk of death and lifelong severe disability. In NSW and ACT it is acceptable medical
practice not to initiate intensive care during the “grey zone” at the parent’s request and after appropriate
counselling.

Michaela - posted on 02/15/2011

The age of viability in Australia is actually 2O weeks and not 24 weeks.

I work on a large city neonatal intensive care unit. We do care for little ones at 23 weeks and 24 weeks gestation but the very sad reality is a large proportion at this gestation will not survive, let alone at 20 through 22 weeks.

To survive is one thing, and to survive with an intact functioning brain and body is another thing.

My colleagues and I are passionate about these babies and their famlies, but sadly a 20 week infant even with the best of technology to assist it will not survive long term at this stage.and the kindest thing is to allow that fmaily time with their baby however long that may be.

The journey for micro-preemies is a very long and arduous one filled with many ups and downs. I personally feel even at 23 weeks are we doing these little ones an injustice trying to save them when their short lives end up filled with much pain from invasive technology that tries to save them and long term they have a multitude of problems.

i sincerely hope and pray in the future we will have surfactants and technology that can assist those 20-22 weekers. In the meantime, I pray for all who are parents to angel babies.

Mum to angel babies Laura and Samuel April 1997 and passionate NICU nurse.

Shannen - posted on 02/15/2011

I personally think it should stay at 24 weeks with room to move. It shouldn't be a case of your baby is 23 weeks it doesn't get the chance for survival but it should be a ok that baby is 23 weeks the cut of is 24 but how is that baby handling being alive if it isn't coping then let go but if it is fighting then let us help it fight.

Alyssa - posted on 02/14/2011

Whether a baby may or may not develop disabilities out of being preterm, does not even factor into my logic. Having worked in the disability industry for many years I could never imagine any of the people I worked with not being who they are and everything that encompasses. They are not damaged goods that should have never have been allowed to be born. If we all look hard enough EVERYONE has something different about us.
Who are we to judge someones "quality of life". It is a question that can only be answered subjectively.

Sharon - posted on 02/14/2011

Mandy - die in pain? Or to live in pain? the only way to avoid pain is to never try.

Melissa - posted on 02/14/2011

I think its so cruel for them to die in pain. And FOr those babies who fight hard but lose their fight later there are still the ones that are healthy and stay healthy and live a normal life. Should these babies just be left to die . theres no gurantees.

Sal - posted on 02/14/2011

i see that people are mentioning babies who are happy healthy examples of prem birth (me included), but how many stories are there of the poor babies who had a hard struggle to live a life of medical emergencies and poor life quality, there would be millions not just the shining examples of sucess, i know many many more babies who didn't live past the 1st few months had a life full of drip operations tube feeding and pain, the parents i know of these babies wanted them to live, wanted them to thrive, they were loved and had al the best that the health sector could offer and they didn;t make it, and their parents wouldn't at the time done anything differently but i have heard them say if the situation were to be repeated they might not make the baby fight so hard just let them slip quietly and peacfully away...i don't know the answer but i;m guessing the drs make this gestation viable for a reason, they are able to (and have to) look at it in a non emotional way, maybe poppi was ment to die so this conversation was had,

Melissa - posted on 02/14/2011

April is exactly right there are so many babies born early even 24 weeks with no problems whatsoever

April - posted on 02/14/2011

@ Deanna You are making an assumption that all 1-2 pound babies end up having disabilities for the rest of their lives. As I have mentioned already you cannot make assumptions about future quality of life. My best friend was only 1 pound when she was born and she is a graphic artist...completely normal...no disabilities. Her former boyfriend was also a micro-preemie. He has no disabilities either. Both of them are leading normal, happy lives with their significant others. At birth, no one thought they'd even life. They'll be blind, they said. They'll have learning disabilities, they said. Well, the doctors were wrong.

Melissa - posted on 02/14/2011

its so sad :( I was looking through all the photos the baby who they said they could do nothing for unless born after midnight she was born after midnight, just, and is now healthy and 10 years old/ The babies who the parents begged them to help they continued crying and breathing for 5 hours or more and they are not allowed to be helped :( My heart was broken reading it all last night

Stifler's - posted on 02/14/2011

This just sounds like a massive fail on the part of Bundaberg hospital. Seriously. I've never heard anything good about anyone's birth experience from there, I'm glad I moved away.

Alyssa - posted on 02/14/2011

IMO There has to be a line drawn somewhere. If the medical profession believes 24 weeks is the age it should be then who am I to say no help them earlier...afterall I'm not a doctor.

It's sad that in this case the woman didn't really know the GA of her baby so it was up to the doctors to judge what age the baby was when she was born and then make a decision. Did they help her with necessary precautions...No. Was she treated with priority..No. BUT we have to trust that the doctors probably knew there was no chance the baby could be resuscitated or survive - perhaps this is why she did not receive the treatment?

Mike, in Australia we do have a (debatably) pretty good health care system. The costs would have been incurred by the government and I would never think they would refuse the best medical treatment according to need based on cost. We have the Royal Flying Doctors Service which is probably the plane she went on. It doesn't cost the patient and is partly funded by the govt and mostly by the private sector.

Nikki - posted on 02/14/2011

I sat here last night going through all the photo's on the invitation site. My god my heart breaks for these mother's. I just cannot imagine the pain.

I understand that there are reason's for the law, however I feel that rather than a cut off age they should look at it from a case by case perspective. If that is a viable option?

My twin nephews were born at 24 weeks, they are now 3 years old, no serious medical issues. They have a very slight developmental delay, and one of them needs glasses, other than they they are strong, healthy and happy. I just think to myself if they were a few days younger, under this law they would not have survived.

I don't know the right or wrong answer, I do not have the education in such area's to make a proper judgement call. All I know is from a my own perspective as a mother if my baby was born breathing I would want them to try and save them.

Karen - posted on 02/14/2011

Although this is a very heart felt and sad story and my heart goes out to the women in this situation, I believe the law is in place for a reason.
For the few people here that have mentioned a baby 20-24 weeks GA being a happy baby with minimal health issues, imagine the thousands and thousands of 20-24 GA babies that have been spared a life of poor quality and bad health by not being resuscitated. Sorry to everyone who feels differently, and I may regret saying it if I ever find myself in this situation but there needs to be a cut off point. As a lady further down states, this lady was between 20-24 weeks, the next lady might be at 18 weeks and want the law changed, the next one might be at 15 weeks and want the law changed, with modern science advancing the way it is I’m sure this will one day be possible, along with test tube ad interspecies gestations, but where do we draw the line and where do ethics and standard of life come into play?

Sal - posted on 02/14/2011

my heart breaks for this mum and any mum and dad who are in this position but i guess i do put my life and the life of my family in the hands of drs, and take their opinions seriously, sometimes awful things happen we want someone to blame but sometimes lives are not ment to, i have seen so much heart ache for parents when they lose a baby at a 24 weeks gestaion or 10 yrs old or still have the greif when someone loses a child 50ys old. if they change the law to 24 weeks then someone will want it at 20 then someone would lose a baby at 15 weeks and want it changed, so i guess the law has to put a figure on it some where and i guess with new medical procedures and treatments sucess rates are better but what is the outcome for a baby at 24 weeks, are there just too many thimgs undevelpoed to have a happy outcome? i think that the quality of life of the child must be considered. i do know a baby born at 25 weeks who is a wonderful little girl with only minimal hearing issue. I doubt it would be an expence issue, my daughter was flown at govt expence for what was a minor problem (we didn;t know that at the time though) without a second thought. and hospitals spend huge amounts of resourses looking after prem babies and other patients who have a poor expected outcome (don;t know how else to say that, so please don;t pick)

Deanna - posted on 02/14/2011

IMHO I am against it. Sorry but though I have lost a child that was premature as well I still wouldn't agree with it. There is a reason why that child came early or just wasn't "viable" as they say. Premature babies typically have various added health issues from birth through adulthood.

However, I do understand why everyone wants every baby to live and make it. Us momma's are very attached to our babies even from conception. However, it isn't always meant to be and I believe people need to step back and look at the consequences or babies born to premature.

I have 2 cousins that were premature (22-24wks gestation) Whereas my aunt loves them and I am glad she has adopted them I still think that maybe it would have been easier to just let that 1-2lbs baby pass away than to force it to live when it couldn't without all the extra help. IMHO

April - posted on 02/14/2011

I believe everyone deserves a chance at life. We cannot predict quality of life and that is exactly what the doctors in this story did. "Experience" and "Professionalism" told them that the little girl simply wasn't worth their efforts.

I know of a few babies that were considered micro-preemies and all have survived. One is the beautiful daughter of my close friend. Not only was she born at 25 weeks, but she was also small for gestational age (smaller than a typical 25 weeker). She is still in the hospital even though she is nearly 6 months old...but who can say this baby girl isn't going to grow up with straight A's in school, surrounded by a lot of friends? TODAY, she is working to breathe with the help of machines...in a few tomorrows she could be home with her family taking the world by a storm! Who's to say she won't be? You cannot predict.

Mary - posted on 02/14/2011

As hard as this situation is, some babies really should not be put through the torture of a resuscitation. I am not familiar with this story, so all I can go on is this mother's emotional and obviously heartbreaking account of her story. It's moving, but not a factual account of the events. It doesn't even say what her estimated gestational age even was.

However, based on the few rather unclear details she gives, it sounds to me as if they did do the right thing by not resuscitating this baby. It also sounds like she was in a hospital not equipped to care for a micro-premie. Should they have transported her? If she was truly abrupting, she most likely was too unstable to transport, and her statement that she had lost enough blood to be shocky supports that assumption. Transporting her could have meant they both ended up dead.

We all want to believe in miracles when it comes to the life of premature child. We all hope that baby can defy the odds, and survive as more than a vegetable. Sadly, that is rarely the case.

Marylea - posted on 02/14/2011

This hurts my heart so much (oh great now I'm bawling) My daughter was born premature. I was living in a town where they wont even deliver term babies (unless its an emergency) because they don't have the proper equipment and no one there can do c-sections. The doctors expect you to move or to leave town 3 weeks before you due date so that you can deliver at a proper hospital. I went into labour at 28weeks pregnant. Thankfully the on call docter was a young intern with a heart of gold because he stood for 4-5hours with a hand bag pumping air into my daughter's mouth until he could finally get a tube in her lungs for oxygen (she was so tiny and they didn't have the proper equipment/right sized tubing so it was very difficult for them to get the tube in) Two paramedics from BC children's hospital flew to where I was with proper equipment and together they and the doctor and the Lord God himself saved my baby girl. She did not breath when she was born. They could have just left her to die. There was a differnt doctor in the room as well. I remember she stood there picking at her cheap acrylic nails. When my dad had asked her if my daughter was going to be okay she shook her head no at him and my hubby. Everytime I tried to look at my daughter she would purposely step in my way and block my view. She gave up on my daughter and was surprised that she pulled through. I'm glad that it wasn't up to her to save my daughter's life because she was pretty confident that she was going to die. All that being said I now have a healthy happy 23month old little girl.



I think that they should try to save a baby no matter how young. If the parents want to sign a do not resuscitate release form that's up to the them. But no child should be left to die in their parents arms if there is a way to save them (others may feel differently but because of my experience that is how I feel) I read that the youngest baby ever resuscitated in the USA was 16weeks. I don't know how long that baby lived or what health problems it had (the article didn't say) but they were able to get a breathing tube in and stablize it. It hurts to know that if I lived somewhere else or if I had given birth 100 years ago I might not have a daughter right now. My heart goes out to all those who've lost a child.



Marylea~

Louise - posted on 02/14/2011

In the UK all premature babies are treated the same and given the best medical care available starting when the mother goes into premature labour. All efforts are started to stop the labour progressing but if all else fails they will try to resusitate a baby. Really it depends on whether that child has any hope of survival. I am not sure if there is a limit of how much they will help a baby pre 20 weeks. I think they do there best to give each child a sporting chance but if they are going to give that child a life that is full of health problems and the quality of life comes into question then the parents are councilled and advised that if they keep there child alive it could have major disabilities that would be life threatening. Each case is different and only the parents and the medical profession can make decisions on what course of action is taken. It's a terrible worry for many parents but with todays medical advances so much more is available to mothers who find themselves in this position.

Sharon - posted on 02/14/2011

I kinda wonder if this has anything to do with the govt health care. who would recoup the costs of the plane and incredible measures it would take to save a baby that small.

Katherine - posted on 02/14/2011

Of course they should be resuscitated IMO!!!

This is a very sad story, and they should do everything they can if that's what the parents want.

Tara - posted on 02/14/2011

I think it's awful that nothing was done to try to make any attempt to help this baby have the best chance of survival.
In Canada they will make all attempts to ensure that the baby has the best fighting chance of surviving if born too early.
Here's another story with a brighter outcome..

My friend Lisa was pregnant for the first time. She was measuring large for her dates at 22.5 weeks. She went in for an ultrasound (the first one since she was just a few weeks along). She was called into her doctors office that day and was told she was having twins. Her happiness lasted only seconds before she and her husband were told that one of the twins had not developed properly and was significantly smaller than the other one. Her doctor told her to go home and he would make arrangements with a specialist for her later that day or early the next.
That night she started contracting. She went in to the hospital and they could only find one heartbeat. She went into labour and delivered the small dead twin. Her labour stopped for several hours, the administered steroids to develop the other twins lungs, they can't her heavily medicated to try to stop labour from starting up again.
It didn't work. Dare was born at 22.6 weeks. He lived. He is blind, but it's never stopped him from doing anything. They were told he would be developmentally delayed and might not ever catch up to his peers, he's 8 now and top of his class and has tons of friends.
He is not a miracle baby. He is a baby that benefited from the medical technology that exists to save otherwise ill fated babies.
He is a marvel to think about and an amazing testament to the power or science and determination of the human species.
:)