The Great Debate

This crazy shitstorm pitting grieving mum against grieving mum has been brewing on facebook and spilled out into parenting forums and blogs over the worldwidewebz.

Behind this is the friend of a grieving mother whose 23wk baby girl was left to die after her premature birth despite struggling for 2 hours to live.

Yes, I know it sounds emotionally charged when I put it in those words - but the simple fact is that it is emotionally charged and deserves that respect. Rachel Sorensen lost her baby. Her grief is real and does not deserve to be downplayed or glossed over by any other part of this debate.

Feeling as they do that Poppi should have been given the chance, her friend create a facebook event to gather names as a petition to take to policy makers to get the policy revised. That a parent can choose if their pre-24wk baby deserves a chance at life. They picked the age bracket of 20wks to 24wks. Their reasoning on this is all very sound.

At 20 weeks a baby born is a person. They are given a birth certificate and if necessary, a death certificate and a funeral. If they were born breathing and died later then a coroners report must done.

It was stated to Ms Sorensen when she delivered Poppi that they will not do anything for a baby born before 24wks.

While no baby born at 20 weeks has ever survived, it is very clear from this reasoning that there was no malicious intent in the dates chosen, and at the time, sound logical reasoning for these dates to be chosen.

The opposing group have continually asked that they change it to 22-24wks, and that if they did so, then they would go away. The even did just that, and needless to say, the opposing camp did not pick up stumps and leave. They continued to fight.

Now, as I pointed out, no child born at 20 wks gestation has survived. It has been noted by another woman in a forum linked from this group that 100% of babies born at 20wks gestation would have cerebral palsy. As none have survived to confirm this, we will have to dismiss this as 100% speculation, not fact.

It would also not be fair to say that this means there is a 0% chance of survival at 20wks. If you could liken the journey with a Micro-Prem to riding a roller coaster, then the 20wk gestation babies did not meet the height requirement. There is, just on the basis of this petition, a very real chance that the 100% loss rate is due entirely to the 0% intervention rate.

The next week of gestation has two documented survivors. However the opposing camp has argued that one is in fact a 23wk gestation baby on 'corrected dates'. I will give them this and we will stick to just one.

Of this one surviving baby, he at 18yo was suffering no disabilities at all, let alone any caused by his extreme prematurity.

So again the argument that babies born this early would suffer from horrible disabilities is a fallacy. Of all the surviving babies born at 21weeks gestation (based on the dates the opposing came wishes us to use), 100% are not disabled.

Again, that only one baby born at 21wks survived shows a low survival rate is an unsupported statement on the basis of the very low intervention rate.

As they support 22wks gestation and up, we do not need to cover these children.

As we go deeper into the debate, we have those that states that this rule would confound abortion law and strip away the rights of pregnant women. Then in a moment of breathtaking hypocrisy, they pull out the anti-abortionist catch phrase "Someone needs to speak for the baby".

Do I really need to continue with that one?

The next position was in my humble opinion, horrific. "It costs taxpayers to keep premature babies alive".

Yes, it also costs them to keep car accident victims alive, even when their outlook is grim.

No one should attach a price tag to someones life.

But lets get into the real part of the argument, and the reason why I cannot support their position.

"Someone needs to speak for the baby"

There are many facets to this point of the debate so I will try and take it slow on you.

One woman has contended that we would be creating children with disabilities and that they would have no quality of life and would rather be dead.

Some of the disabilities people have stated for premature babies are

• Cerebral Palsy
• Blindness
• Deafness
• Autism Spectrum Disorder
• ADD/ADHA

Because medical establishments do not actively seek to help babies born before 24wks, I can only go on what has been compiled for survivors 24wks and over. This data was collated between 1998 and 2001by NSW NICUS.

Three in ten babies born at 24wks will have one or more diabilities. So starting with 1000, we have 300 with disabilities. It goes on to say that two thirds of these babies will only have a mild disability and can go on to lead an independent and productive life. That means one third, 100 babies, will have a moderate or severe.

The graph below shows around 40% of 23wk babies suffering from moderate or severe. Grouping the two together means I cannot rightly say how many of them are severe, but as there is moderate as well - and I would have to believe the greater portion is moderate as the majority of babies are fine, then we can say that less premature babies suffer major afflictions such as Cerebral Palsy as we are being led to believe.

Bringing down the emotional backdrop of the debate a few notches we can now move onto what it is saying.

It is contended (paraphrasing here) that by attempting to save the life of the premature infant because the parents are "unable to say goodbye", we are creating disabled children.

My Step Daughter was born with Bilateral Retinoblastoma.

Retinoblastoma is a rapidly developing cancerous tumour of the retina. Bilateral means that in her case, both eyes had tumours.

When this discovery was made, she was 6 months old. The tumours had developed inutero and they were not treatable. The only option was enucleation - removal of her eyes. If they did not do this, the cancer would spread and would result in her death.

To save her life they were creating a disabled (blind) child.

This argument contends that my step daughter should have died at a young age from cancer.

In the stance that someone needs to speak for the baby, the truth is that there is someone speaking for children. Their parents. That is their right and theirs alone.

Imagine standing in a hospital emergency room. The doctor tells you that they can save your child, but s/he will lose their arm. Some random stranger walks up and says "Someone needs to speak for that child. S/he would not want to live without their arm. Don't save them". What would you do? You know for a fact you would tell them to back the hell off, it is not their child, it is your child and they have no right to make that decision.

Removing the decision to proceed or desist medical treatment for our own children is a dangerous and slippery slope. While you may think it is justifiable for a 21wk preterm baby, allowing that to happen could make it legally possible for a 10 year old child.

Informed decision making is a right enshrined by law. Whether it be informed consent for ourselves or for our children, you cannot pick and choose the parts you want us all to have. Once you start cherry picking parts out of it, you open the flood gates to remove it all under the premise that "Doctor knows best".

While I have neither pledged my support to the actual cause - for or against - of Poppi's rule, I will not sit idly by as anyone at all demands the removal of our rights to informed consent.

I have not been in a position of losing my old child, nor have I had a premature baby. So as much as people like to think, my reasonings on the actual situation of Poppi's rule are not 'clouded by emotion'. I do not believe though that a parent should accept that their child may have been 'collateral damage' to the cause when s/he could have survived and lived a full life.

I have however been in a position where I have said "No" to a doctor and he has proceeded anyway. I have clearly told two nurses "No" more than once, and had them attempt to hold me down and continue against my wishes.

I will not have my right to consent or refusal stripped away from me by a technicality.

As they say in the movies: Be careful what you wish for. You might just get it.