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NICU Parents : Scared but Vital

Parents are not visitors. They are a vital part of their baby’s care team.

This is not a new photo.

This is me in 2004, with my second son Dillon on his 10th day in this world. He was born at 27 weeks (13 weeks too early) and in total spent 9 weeks in a Neonatal Intensive Care Unit (NICU).

This was my first hold, my first cuddle. And it took 10 long days to get there. That’s why in the photo I am wearing a mask. Not because I was sick, but because I was scared. It is also why I am not wearing any jewellery; so I could reduce the risk of infection. The only thing you can’t see in this photo is the incessant amount of time I washed my hands before I took hold of him. I washed my hand a lot. All the time.

All because I was scared.

I knew how premature his lungs were and I knew how hard he was fighting to stay with us. I also knew I was dealing (not very well) with the guilt of my body not being able to hold onto him longer and I knew I was not going to be the cause of anything else going wrong.  

I was a new mum. My baby was in intensive care fighting for his life and I was scared so I did everything I was told to do to try and protect him.

Now I am sitting here thinking, if that was my fear in a world without Covid-19, imagine the parents of premature and sick babies today in the face of a global pandemic?

We may be putting a lot of things on hold right now – work, school, sporting events, weddings and parties – but the birth of a baby we cannot. Babies continue being born every day and in Australia, every single day, approximately 132 are born premature or sick requiring specialised care.

That’s 132 new families every day, scared.

Over the weekend, I read a CNN article of an Atlanta, Georgia couple who, because of isolation restrictions can no longer visit their newborn in care. When mum Kim was given the news that she would not be able to see her little baby, Nico, until he was ready to go home, Kim “broke down”. She described how when he was first born, she was initially told about the significance of bonding and given handouts explaining the importance of skin-to-skin contact with her baby. All of that now prohibited because of new measures surrounding the virus outbreak.

As a mother who has been there, not once, but 3 times because every one my boys were born early, this is absolutely heartbreaking.

And I pray this does not happen to families in Australia.

We know that babies born extremely early and sick are at a higher risk of many life threatening complications. We know that devastatingly a small amount of babies die as a result, and for the rest we know that longterm, these babies may face many health challenges including chronic lung disease and a compromised immune system. And although we were lucky with Dillon that the effect of his prematurity on his lungs was mild, we still experienced difficulties with his breathing until he was 8 years old. That’s a long time to be scared.

But this is what we also know for premature and sick babies in an intensive care unit – interaction with their parents is vital for both a babies development and the emotional health of its parents.

We know that:

–         Skin-to-skin contact (or Kangaroo Care) by parents with their premature or sick baby has immense medical benefits. It helps stabilise a baby’s heart rate, temperature and breathing.

–         For mothers, Kangaroo Care assists in the production of breastmilk and in the establishment of breastfeeding

–         Breastmilk is vital for babies born premature or sick. It is critical for their development and can reduce the risk of developing Necrotizing enterocolitis (NEC), a potentially fatal disease.

–         Babies who have combined care with their parents whilst in hospital have been shown to experience less infections and shorter hospital stays

–         Parents, and yes this includes fathers, are two and a half times more likely to suffer from depression and anxiety and experience low levels of parent confidence following the early birth of a baby, with separation being cited as one of the key contributing factors.

Imagine these benefits not being an option for your newborn baby who has just been born premature or sick and has an already compromised immune system. 

In 2014, a combined international study between NICUs in Canada, Australia and New Zealand, called FICare (Family Integrated Care) actioned a model in which parents where no longer considered visitors but rather a vital part of their baby’s care team.

Taken directly from the study’s website, the results suggest that “infants admitted to the NICU and cared for under the FICare model grow faster and have less stress, spend fewer days in the NICU, and are less likely to be readmitted to hospital after discharge, compared to infants cared for primarily by staff. These infants are also more likely to be breastfed and for a longer time, which provides a host of long-term health benefits. The improved confidence and skills of parents in FICare increases parental readiness for the transition from hospital to home, improves management abilities at home, and lowers parental anxiety.”

Simply put – parents are not visitors. They are a unit with their baby and a vital part of their baby’s care team.

I can’t imagine how distressing it would be to be told you cannot see your baby till they ready to come home. That will be months for some parents. It would have been for me.

Since our formation in 2005 by NICU mums, Miracle Babies Foundation has strongly advocated for more inclusion of parents every step of the way. This has always included a push for onsite parent accommodation so that parents can remain with their babies for their entire hospital stay. Something many health professionals also support. Unfortunately, our hospitals have not been built that way, however, if there was ever something to highlight why there should be no separation between mothers and babies, and for every hospital in our country with a NICU to have the facilities for parents to room-in with their babies, I think this pandemic is it.

The CNN article also shared the immense sadness of hospital staff at having to enforce a ‘no parents’ rule and expressed their concern for themselves, their own families and other patients. I completely understand this. These are extraordinary times and extraordinary measures need to be taken to protect our entire community. But trust me, no one recognises the importance of this more than the parent of a preterm baby. Self isolation, especially once baby is discharged, is not a new concept for miracle families.

We simply must not minimise a parents value to the growth, safety and development of their preterm or sick baby or their ability to take the necessary and responsible steps for the health of all.

I hope together we find a way through this. One that keeps everyone safe and supported. 

My heart used to burn every time I walked away from Dillon. Now my heart burns for every miracle parent having to walk away from their premature or sick baby in such uncertain times. I know what their scared feels like.

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Originally published at www.melindacruz.com

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