The following is an open letter from mum Jenna about taking her daughter Matilda out in public with a feeding tube in place. So many aspects of PRS are challenging, but sometimes the simple things are the most challenging of all.
Putting my daughter in the pram to wheel her out of hospital was intoxicating.
We were told expect to need IVF but conceived naturally, then somehow breezed through a high risk pregnancy with my biggest problems morning sickness and heartburn. But our fairy tale fell apart when she was born and struggled to breathe. For the first three weeks of her life I’d driven home from the hospital to the empty bassinet, to catch a few hours sleep while she received around the clock care. The day I wheeled her out, I finally felt like a normal Mum. I was using my pram, my car capsule. She was in clothes I had bought her. She was sent home with an apnoea monitor, a cpap machine and a feeding tube. It wasn’t going to be easy, but we couldn’t wait to get her home and start our life as a family.
When we pop out to the shops, people see the pram and have a peek inside. Who can resist a baby, right?
They’re smiling as they look, but then they see the yellow tube that comes out of her nose and is taped in place on her cheek. Sometimes the smile just falters and they look away. Sometimes they physically pull back and carry on their way. It’s a surprise and they’re uncomfortable, but I even though I barely see her tube, I understand.
Sometimes they look up, at me. I feel my back stiffen, bracing myself. I try to smile like I imagine the mother of a baby being admired normally would.
“What’s wrong with her?”
And so I explain. I answer their questions patiently. I try not to let my voice catch.
But I don’t want her to be defined by her condition. The fact that she has Pierre Robin Sequence doesn’t take into account that her eyes sparkle when she smiles. Her cheeky sense of humour. That she’s just started to laugh, discovered her fingers and can almost roll over.
And I worry, that when she’s old enough to see that people look at her differently, and hear them ask what’s wrong, that she’ll start to define herself by her condition too.
But once, someone leaned over the pram, and I waited, exhausted, reaching in my mind for the answers to the questions that would come, lining them up like little toy soldiers ready to protect me with information instead of emotion.
But the questions didn’t come. This lovely woman just said “Oh, she’s beautiful!” and smiled at me, a huge, genuinely delighted smile. She meant it. And I paused, confused, and burst into tears.
Now whenever I’m at the Children’s Hospital and see parents with babies, they look like I did. Exhausted, scared, haunted. I catch their eye, and I see the defensiveness I know others must see in me. I smile a huge brilliant smile, without a trace of pity and let all the happiness my daughter brings flow out like sunshine. Have hope, I want to say to them, it really does get better. And for a moment they’re confused - but then they always beam a brilliant smile back.
So, the next time you look into a pram and see something you don’t expect, don’t be uncomfortable. Ask how old they are, are they sleeping through the night? Offer us your unsolicited parenting advice or tell us we look tired. Just don’t ask what’s wrong with them – try to see what we see, because to us, they’re absolutely perfect.