You may remember Ruth Everard, who wrote the story ‘When walking isn’t meant to be‘, for us. Ruth runs Dragonmobility, a not-for-profit project which manufactures bespoke SnapDragon powerchairs for children from twelve months. With a wealth of expertise in child development and mainstream integration of disabled children, the team can guide you, or someone you know, through the transition to powered mobility.
There is an 80% chance a premature baby will have no serious lasting effects and, whether they do or not, a new baby is always to be celebrated.
As I was preparing Dragonmobility’s latest Development Prospectus, I was particularly struck by the data we included about premature births. Pre-term births increase the chance of disability for children like Grace in this video, whose cerebral palsy is the result of being born at 32 weeks.
I had no idea until I asked those nice people at the National Office of Statistics that a whopping 1 in every 13 babies is born before 38 weeks. One-fifth of those will suffer life-long effects.
Because of my work with families who have been through it and are in the unfortunate fifth, I imagined as I pored over these statistics that I would be able to be terribly supportive if a friend of mine gave birth prematurely. And then it happened. Within about three days of these thoughts passing through my brain, someone I’d known at college delivered her son a terrifying seven weeks early. And how did I react? I was paralysed with fear of saying the wrong thing: I wanted to be encouraging and to stretch out and let her know that I cared, but I spent about an hour worrying about what to write on her Facebook status and several more hours worrying that I might have said the wrong thing. How can I begin to imagine the panic of going into labour unexpectedly and the intensity with which you would will your baby to fight and pull through?
Looking at the picture of a tiny, fragile new person on my computer screen did give me a glimpse that I hadn’t had before though. I was able to better understand how it might feel to be the friend who watches equally powerlessly in a similar situation, as parents get the devastating news that their child won’t walk and they call on us at Dragonmobility for help. Looking on, when someone you love has a premature baby or when there is the prospect of a shattering life-long diagnosis, the impulses and fears are roughly the same.
When anything bad happens, particularly for us British I suspect, we often don’t know what to say. We have a social construct for what to do and what to say if an adult dies. But what if, in our minds, the thing that our friend is going through is unimaginable? What if their child’s life is in danger? What if their child might be disabled forever?
Since that day when I saw the picture of my friend’s son and felt so helpless, I’ve had the opportunity to chat to her about what happened, about how it felt and what she needed.
I had tried with little success to get my head round why she would post on Facebook so soon after giving birth, but when she described it to me it made so much sense. Within an hour of her arrival at the hospital her baby was whisked away by medical staff and she was left in a quiet room. It would be another three or four hours before she was well enough to go to where her son was. The picture I saw on Facebook was the first one her husband messaged to her in her eerily peaceful hospital bed from the neo-natal intensive care unit where he was. She posted it in the silence to herald their son’s arrival, to celebrate, to let the world know of his very being.
I asked her outright if anyone had responded in a way that hurt her feelings, and she said no. She felt surrounded by love and support through the likes and congratulations which flooded her page.
Families whose babies were more poorly than hers observed that they got very few messages at all. Nobody wanted to say something tactless, and so the silence of friends was the hurtful thing. These families, even if they needed privacy and could not receive visitors, missed the flood of congratulations that acknowledge a birth. In the face of an emergency their emotions were still surrounded with joy at becoming parents, and they needed their friends and family to show they shared in that joy.
In addition to the emotional support social media could give, there was a far more practical benefit. You see, nobody was expecting these babies to arrive for another couple of months. Families in this position are unexpectedly camped out in intensive care with their vulnerable child. Thanks to Facebook, their friends can all know spontaneously to rally round. They know to bring food. A local network can keep parents sane by physically arriving in the hospital and giving support. Friends who are further away make it known that they can be called upon if necessary.
However it is that you know an expectant family (or a family whose child might be diagnosed with a disability) – whether it is your best friend, a colleague or a mum you nod to at the school gates – here are a few things to think about:
*When you hear news of any birth give your best wishes in whatever way you can – focus on the joy of the new arrival and every milestone, because the parents will be tormented enough for themselves with fears of worst case scenarios. Tell them that you see that their baby is perfect, as all babies are, and celebrate their child’s existence.
*On Facebook ‘like’ pictures if that’s all you can do, or give the same congratulatory messages you would have done at 40 weeks, and at any of those little childhood triumphs that follow.
*If you’re local, offer tangible immediate help like food or laundry, and ask what else they need as they are thrown unprepared into medical stuff and hospitals.
*Offer to visit (but do it on their terms and only if they want you to – and be ready to leave again if you arrive at what turns out to be a bad time). Just knowing that you were willing to make the trip will give comfort.
*Think about practicalities of having a child in hospital for an extended period of time (maybe far from home) – does mum need a lift to the hospital when dad’s had to go back to work and grandma’s looking after the other children? If an older child is in your child’s class, can you do school pick-ups and babysit?
Above all, remember that in rocky times parents need to know that the people who care about them are still there. You are unlikely to say the wrong thing, and if everybody shies away for fear of being insensitive then your friends may have an even tougher journey than they are already on.