To share or not to share

congratsI take a quick look at Facebook and I see a timeline that includes pictures of proud parents presenting their newest arrivals. We ‘like’ photos of cute little bundles, post congratulatory messages and send cards as we share in the joy of new mums and dads. And that is how it should be; a joyous occasion, the arrival of a new precious life, one to be treasured and celebrated. Parents of premature babies are just as proud, but for them the reality is very different.

There is no etiquette, no right or wrong way to celebrate the birth of a baby born small and fragile, but sharing the news of a premature birth is often done with caution. When our son was born with little warning at 30 weeks we told just family and close friends. We found it a difficult to convey that our baby was on a ventilator, that he needed a lot of medical support and would be in hospital for weeks or months, when at the same time not wanting to overly worry people. We sent out a message that our little baby needed help with his breathing, that over time he should grow stronger and would eventually come home near his due date – which to us seemed like a life time away.

My husband telephoned my work to let them know I wouldn’t be in the following week (having a very premature baby means you are still often weeks away from going off on maternity leave). My colleagues were excited – ‘wonderful news’ ‘so pleased for you’ ‘can’t wait to meet the baby’ – until he explained the reality of birth at 30 weeks. We found it strange to hear people describing the sudden birth as wonderful news, yet at the same time felt a loss at not being able to celebrate or have others celebrate our new arrival.

facebookOur first post on social media (facebook) was when Sam was five days old, he’d come off the ventilator that afternoon and was now on CPAP (Continuous Positive Airway Pressure). It was a simple message updating our wider circle of friends who had begun to hear the news. We didn’t post any pictures, with photos reserved only for our closest family. I remember a friend gasping when I showed them a picture of Sam aged 6 weeks; he still had his nasogastric tube in. I decided not to show them any earlier photos!

My husband and I spoke at length about sharing photos, particularly when we had a request to include a picture of our new baby in a work newsletter. We talked about waiting until all the breathing tubes had gone, but we were so proud of our little boy taking each day in his stride that we decided to do what other proud parents do and sent in our photo. We don’t know why our picture wasn’t included in the newsletter, but for us it felt like another reminder that having a premature baby In hospital is so very different from what anyone expects.

1st picThree years on we have shared our pictures through the Smallest Things to help raise awareness. Yet three years on the nagging feelings of hurt, loss and jelousy still creep in when I see photos announcing the arrival of new bundles of joy – pictures that spring out at me of babies with chubby rosey cheeks, cradled in their mothers arms. These feelings I know are shared by other parents of babies born too soon and in that and the work we are doing to raise awareness I take comfort.

2 thoughts on “To share or not to share

  1. Leigh Kendall

    Interesting post. We shared everything about Hugo. When I was admitted to hospital three days before Hugo was born, we felt we needed all the support we could get, so we kept all our friends and family up-to-date on social media. We were especially grateful to have taken this approach because we were in a hospital two hours away from home – it helped stop us feel so isolated. People – including strangers, thanks to Facebook’s ‘privacy’ settings – followed Hugo’s progress, and were really rooting for him. It was wonderful to have that support. I think people found it an interesting insight in to the world of a preemie and the NNU – it’s not something you commonly hear about. When Hugo sadly died, we were inundated with kind messages saying how sorry they were and how he had touched them. It is a small comfort to know how many people’s lives Hugo has affected. Sharing or not sharing is completely personal of course – but this approach worked for us. It’s a shame your baby’s photo wasn’t included in the work newsletter – I’ve no idea of the reason behind it, but it seems wrong to exclude him xxx

    Like

    Reply
  2. Catriona Ogilvy Post author

    Reblogged this on The Smallest Things and commented:

    The arrival of a new baby is a moment to celebrate, a joyous occasion –
    yet for parents of babies born too soon that moment can be very different as the reality of having a premature baby sinks in. Sharing the news of a premature birth can be tricky; too upbeat and celebratory and people will think that everything is fine. Too cautious and you can be left with a sadness that no one is celebrating the precious birth of your son or daughter – every birth, early or not should be celebrated.
    How to share the news is up to individual parents; how to tell, who to tell, what to say, how much caution to add when you find yourself in uncertain world of NICU and of course whether to share on social media. This post explores the feelings around announcing the arrival of a premature baby, but misses out the ongoing communication required with the outside world during the weeks or months of your neonatal stay.
    Throughout our eight week journey we communicated through an email group of family members, keeping them updated of any changes. Day-to-day news was shared directly with grandparents, but this information only touched the surface of what our day-to-day life was really like. I realised this when I read a diary of our time in NICU. The diary had been kept by a grandparent and was based upon the information we had shared with them. There was so much missing. Plans, routines, cares, oxygen levels, incubator temperatures, number of mls, hours between feeds – so much information and so many variables changing, and then changing back again, on a daily basis.
    You can be certain of one thing in NICU; there will be ups and downs. Sometimes just keeping on top of these changes yourself is enough and perhaps it is easier to share only the things you are certain of, rather than the uncertainties and the subsequent disappointment or questions that arise from a change.

    Like

    Reply

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s