The serious and difficult outcomes of saving extremely premature babies.

According to the CDC 1 in every 8 babies born in the US is preterm (birth of an infant prior to 37 weeks of pregnancy). 35% of all infant deaths in 2009 were because of preterm related causes of death. The US health care system spent about $26 billion on preterm births in 2005.
But the statistic that should be raising concern is that 'preterm birth is also a leading cause of long-term neurological disabilities in children.'

With modern medicine and all our advances in medical sciences, we have made it possible to save babies born at 22-23 weeks of gestation.  But preterm births are associated with some serious short term and long term complications. Not only do these prevent the child from living a normal healthy life they can take a severe toll on the family and the community. 

In the article 'Nathan was born at 23 weeks. If I'd known then what I do now, I'd have wanted him to die in my arms' reporter Tracy McVeigh covers the story of Alexia Pearce mother of a three years old son who was born prematurely at 23 weeks and now lives a difficult life with cerebral palsy and chronic lung disease. Alexia loves her son deeply yet she asks if "we are always right to save premature babies". Here are excerpt of the story;

Alexia Pearce looks at her three-year-old son Nathan every day and feels the same rush of guilt. Guilt that she chose to let him live when he was born too early, just 23 weeks into her pregnancy. "If I'd known then what I know now about what extremely premature babies have to go though, I would not have chosen that for my little boy.

"I would have wanted them to give him to me and for him to pass away in my arms. I find the whole issue of what he has been put through, what he continues to be put through, very difficult. I feel very guilty that I took that decision, postponing the inevitable."

"He can't walk or talk. He's oxygen dependent, although hopefully that might change. He has chronic lung disease, cerebral palsy and global developmental delay. He has diabetes inspidus and his thermostat is a bit wonky so he gets hot and cold."
It is, says Pearce, a great taboo to wonder if she should have let her son go when he was born so fragile and weak, but one that she feels strongly that she should break. "More people need to be aware of what these little chaps go through," she said.
"I have no regrets that what has happened has happened. Now this most gorgeous little thing is here and I absolutely adore him. I am so glad I have got to know him. But that doesn't stop me knowing that all I have done is postpone the inevitable. He's not expected to live a very long life. I don't think he'll make it to his teens. He's so frail.

While the latest figures show that 39% of babies born at 24 weeks are now surviving with help from medical advances, the chances of those children suffering no serious ill-effects in later life are low – around six in 100.Last year, researchers from University College Hospital, London, found that premature babies were more sensitive to pain. All pre-term babies are more at risk of a lower IQ, poorer cognitive functioning, learning disabilities and behavioural problems such as attention deficit disorder than full-term babies.
Last year, researchers from University College Hospital, London, found that premature babies were more sensitive to pain. All pre-term babies are more at risk of a lower IQ, poorer cognitive functioning, learning disabilities and behavioural problems such as attention deficit disorder than full-term babies.
"You hear about 'miracle babies' or 'little fighters' and people have such a romantic view about premature babies – 'Oh, there's an incubator for a little while and then they go home and everything is rosy'. It's not."

"Obviously every life deserves a chance, every life. But you wouldn't put an adult through that. You wouldn't put an animal through it. If an adult required that level of medical intervention then someone would be taking the family aside and suggesting gently that the machines are switched off."
Pearce had no warning of her own premature birth, brought about by a sudden complication in the pregnancy, a placental abruption, and had none of the risk factors – she doesn't drink or smoke, isn't obese and her first son, Dominick, now five, was born at full term.

"Birth and death are the most natural processes a body can go through and Nathan's birth and treatment was so far removed from that. Strange birth, choices to be made, difficult bonding. I had to wait six weeks to hold my son and when I did he was still attached to a ventilator and I had many nurses around me. It was all so clinical."
An advocate or counsellor figure would, she feels, help the mother think more clearly about the situation.

But for Alexia Pearce, it's important for families to fully understand too that the difficult times do not end when the baby leaves the incubator. "When you go into labour that early, nobody is a winner," she said. "I'm not saying stop people from having their premature baby resuscitated. I'm not saying babies shouldn't be saved. I am saying that the myth that there is a happy ever after needs to be explored and it's important that we talk about it.

(Read Complete Article)

References:
'Nathan was born at 23 weeks. If I'd known then what I do now, I'd have wanted him to die in my arms' (The Guardian/The Observer)
CDC Reproductive Health- Preterm Births 
Preterm Births- Complications (Mayo Clinic) 

Neurodevelopmental, Health, and Family Outcomes for Infants Born Preterm

(NCBI- National Center for Biotechnology Information)