I am often asked about my experience of having premature babies and the rollercoaster ride of what a journey like that looks like. People are curious about the delivery and although I can now recount a lot of detail, at the time, emotionally, I was on auto pilot. Shock has a special way of protecting you from the horror that is unfolding. Delivering a baby weeks before it is due does not bring with it the moments of happiness and joy or waiting to hear that first cry like you had planned for. Our room was quiet, people were busy and then those busy people and my baby were gone, headed immediately for the Neonatal Intensive Care Unit (NICU).
For me, probably one of the most emotional days during that time was discharge day- not my baby's, mine. Three days after giving birth I was asked to leave the hospital because
there was nothing wrong with m and they needed the bed. It might sound crazy now but I really did not understand what they were asking of me. Leave the hospital? Not stay here with him? Leave my baby? Absolutely, no-one along the way, not once during my 5 week hospital stay before having him or in the first 2 days after he was born, did one person mention to me that I would be sent home. And it never, in any way, occurred to me that I would have to. And sent home to what? My baby was here. I was already new at this (being a mother) and what kind of mother was I if I was to leave him behind? The strange thing was that the nurses were genuinely surprised by my reaction, even trying to convince me that I would be more comfortable at home. Really? More comfortable without my baby? More comfortable being in an empty house? More comfortable travelling back and forth each day while my stitches were still healing? More comfortable trying to establish a breastmilk supply and express every three hours without being near my baby? There was no comfort in that. And I actually did not care about being comfortable, I cared that my baby was upstairs in the NICU on machines while I was stuck in maternity surrounded by mothers who had their babies with them. I hated being that far away from him and I hated that it was considered normal and even encouraged to leave.
This was more than 16 years ago and it is beyond comprehension that it is still an expectation of families of premature and sick babies across Australia. These parents should have the right and the ability to remain with their babies. Especially when research shows that this reduces postnatal depression, increases parental confidence and has proven benefits for babies, such as increased weight gain, lower infections and shorter hospital stays. Knowing this, why is it still the norm to be asking parents to leave?
Walk over to the Paediatric Ward and you'll see a different story. In a paediatric ward, you are almost frowned upon if you are to leave your child, trust me, I have been there, you are expected to stay, and stay the whole time. And yet for a newborn baby, you are told to go? Why is this? And where is the care for the mother as she heals from giving birth and tries to establish a milk supply which research heavily shows is crucial for a premature baby's survival and outcomes?
Also following a full term birth, new mothers are able to have 3-5 days in the hospital environment to provide fulltime care for their baby under the full support of medical and nursing professionals, however, with a premature or sick baby, a baby can be discharged after a long hospital stay without either parent having been the fulltime primary carer at any stage. And some of these babies go home on oxygen or being tube feed. Why don't these mothers have the same rights as those who have full term, uncomplicated deliveries?
How do we also protect families who have been transferred into intensive care units from rural areas or families whose newborn baby is critical and dying? How is 24 hour parental involvement not considered part of routine care?
Miracle Babies Foundation is the leading Australian organisation representing the interests of families who have birthed a premature or sick baby. Recently, the Foundation hosted the consumer consultation during the development of the current version of the Australian Healthcare Facility Guidelines (AHFG) for Neonatal Units. The AHFG are clear that neonatal units must be developed with consideration of models of care, including parent accommodation rooms and importantly, families must be welcomed as partners of their baby's care within the Neonatal Unit.
This year the needs of families have been further addressed in the European Standards for Newborn Health. The Standards can the found at: https://newborn-health-standards.org
Expert clinicians in partnership with the European Foundation for the Care of Newborn Infants (EFCNI) developed the Standards. The trans disciplinary and international composition of the authors has set new benchmarks for the care of newborn babies and these standards are truly patient and parent focused. The document questions existing structures, identifies service gaps and, if adopted, will advance national health care systems.
The European Standards highlights gaps within Australia including Hospital Admission Policies that preclude couplet care - there should be facilities that allow mother's medical care to be alongside with that of her infants to avoid separation and, lack of provisions to allow parents to be continually present and involved in the care of their infant.
These needs aren't part of a wish list - the long-term health and economic benefits are indisputable and the legal context is clear. The United Nations Convention on the Rights of the Child indicates that "the child shall have the right from birth... to be cared for by his or her parents." (Article7) and that "parties shall ensure that a child shall not be separated from his or her parents against their will" (Article 9).
Miracle Babies Foundation is one of the 108 international healthcare societies and 50 parent organisations that endorse the European Standards for Newborn Health. The Foundation is also calling on the Royal Australia and New Zealand College of Physicians to endorse these Standards and to support our call for all Parent Organisations, Professional Colleges and Societies, Hospitals and all levels of government to also endorse these standards.
Parents should have continuous access to their baby and should be supported to remain with their baby throughout their hospital stay. It must be guaranteed that as neonatal units undergo rebuilds, they are designed so that every baby exercises their right to be cared for by their parent and for every parent to care for their baby.
Not only will supporting these standards lead to reduced healthcare costs, but more significantly, they will improve clinically important outcomes such as growth, serious infection and gut and lung diseases in our babies, increase breastfeeding rates and improve parental mental and emotional health.
It is vital that we move to a place where mother's discharge day and baby's discharge day are no longer separate and instead are the exact same day.
Click here to have your say on being separated from your baby during their time in a Neonatal Intensive Care Unit: https://www.surveymonkey.com/r/V8HXCGX
Originally published at www.miraclebabies.org.au