Lifes Little Treaures are a Melbourne group of mothers who have experienced the roller coaster ride of N.I.C.U. & Special Care Nurseries, who would like to provide you with support and friendship. They provide morning tea’s at many different locations around Melbourne, quarterly newsletter, buddy program, parent information booklet and more.

I joined their committee this month and will be creating their new website which has plenty of information for parents of premature babies. They are a founding member of the new National Premmie Foundation and are such a lovely group of women to work with. They work alongside the Royal Women’s Hospital and Monash Medical Centre in Melbourne Victoria.

Alot of the mothers have had premature babies born around the 24 week gestation so they really know how tough it is.

www.lifeslittletreasures.org.au

Federal Health Minister Tony Abbott says decisions about whether to keep sick premature babies alive should not be “forced on” families by governments.

He said discussions about whether to treat premature babies who were unlikely to survive, or were likely to be seriously disabled, were already happening between clinicians and families.

But he said a potential overlap in the period in which late-term abortions occurred and very premature babies were born, “raised very serious ethical questions” that were important in the debate.

The matter of the overlap, in which a baby could be aborted at 23 weeks’ gestation while a premature baby born at 24 weeks could be saved, was first raised last year by his parliamentary secretary, Christopher Pyne.

“There is a real issue when you’ve got one part of the hospital desperately trying to save these kids and the other part of the hospital terminating them,” Mr Abbott said.

He said the issue would not be resolved by letting sick babies die in neonatal intensive care units.

“I don’t think we resolve this dilemma by not intervening to try to save premature babies,” he said.
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Mr Abbott’s state counterpart, Bronwyn Pike, said this week there needed to be public debate about whether the most premature babies who faced poor futures should be allowed to die.

Ms Pike’s comments came as doctors and nurses in Britain this week are debating whether there should be a point at which babies are no longer treated.

In Holland, intensive care is not routinely administered to babies born before 25 weeks’ gestation.

Research shows that one in five premature babies will have a serious disability, compared with one in 25 babies born at full-term or about 40 weeks.

“If we were turning off life-support systems for budgetary reasons, and not because they’re the decisions that families have made, I think that would be very, very sad,” Mr Abbott said.

“These things are always being debated.

“Every human being at some stage of his or her life thinks things like, ‘If I’m very old and very sick and have some kind of a health episode, how heroic do I want the efforts to revive me to be?’ I think most people from time to time think about these things.”

Leanne Uwland, president of Austprem, a support group for premature babies’ parents, said the decision to end a baby’s life should be one made on a “baby-to-baby basis”.

“I don’t believe in drawing a line in the sand and saying for anyone who’s younger than this gestation, ‘I’m sorry but we’re not helping them’,” Ms Uwland said.

“You can’t judge at birth what a baby’s outcome is going to be.”

She said the issue also raised the debate about the ethical right to decide what a life is.

Article from The Age

Each parent will have their own unique experience of living with a premature baby. Some babies will go home on oxygen, need continuous special care and some will be re-admitted to hospital quite a few times in the first year of life because they are very septile to colds, flu and infections.

We have been very lucky with our journey since our son Ronan came home. Ronan was born at 27 weeks gestation and after spending over 3 months in hospital we were overjoyed when we were able to bring him home with us. Within the first month we had endless appointments lined up with a paediatrician, respitory specialist, Maternal Child & Health Nurse, HITH (Hospital In The Home) which is a program for very premature babies leaving hospital and are put onto when they leave special care. A nurse comes around to your home each day for a week or until they feel you as a parent is comfortable with looking after your baby. When you take your baby home it is a very different experience than having a full term baby as you have a lot of follow up care.

As the months go by and your child is growing you continue to have follow up care with hearing appointments, eye sight tests, paediatrician & other appointments depending on how your child is developing. My son is behind with his milestones so he is now having physio once a fortnight as recommended through the paediatrician. We have daily exercises we work on to help strengthen Ronan’s muscles which in the long run will help with his milestones of sitting, walking, crawling.

The biggest fear of having your premature baby at home is the fear of them stopping to breath. When you have an extreme prem it is likely that they are on oxygen for a long time whilst in hospital. When suddenly there is no oxygen, no monitors attached to them, you have no idea how their oxygen levels are or heart rate it is so it can be very daunting for some parents when you start to rely on them like the medical staff. Whilst you keep reminding yourself that they would not be discharged to go home if they were not physically capable to be off the machines. It is very hard to adjust to this new world of no more machines and takes quite a while to adjust to your own intuition. We found that the best way to help combat this fear was to buy a sound and movement monitor. It let us rest at night without the fear of waking to see our son not breathing. A lot of hospitals recommend that parents of prem babies purchase these.

Whilst there are many thoughts and fears when having your premature baby at home there are some beautiful moments that you will cherish forever. Watching them grow and thrive whilst at home is amazing. They adapt so easily and you fall more in love with them each passing day. Living with a premature baby can be very rewarding also. When you remember how fragile their life was when they were born to how much they have developed into a little person it really is an inspiring experience.