Living on oxygen…

Lucinda Hutton - 20 May 16

When you look at this image I hope you will primarily see a happy, cheeky and smiling toddler – that’s my little man by the way.

What you will also see are wires, lots of wires and an oxygen canister in my hallway. It’s astonishing that living on oxygen has become our current norm. People stop me a lot, even randomly in the street, just to check my little one is ‘ok’. They ask “What’s wrong”? they chime, “he’ll grow out of it” and I’m left having to smile politely or when I’m feeling a little less tired, explain his long list of complex but apparently non-serious medical history to absolute strangers. I know people are ‘just being nice’, but no one likes to be questioned by strangers about their child, parenting or any other personal matter. I thought if I wrote this post, it may help people understand a little better.
My son was born with immature lungs, even though he was a full term baby. He was in intensive care for the first week of his life and has since battled with having a super-fast breathing rate that means he gets fatigued easily, combined with a dairy & soya allergy, which was only diagnosed at 8 months. This has equalled poor weight gain or should I say ‘failure to thrive’, perhaps the most heart-wrenching way of describing an underweight baby that the parents are no doubt desperately trying to fatten up. Combine this with pneumonia and a bad bout of bronchiolitis that resulted in a 6 week hospital stay and here we are. Out of hospital, but living on oxygen. 5 months and counting…
Why? Quite frankly, they don’t know. The hope is that the little guy will grow up, fatten up, toughen up and so will his lungs. My biggest unanswered question is when. When will live go back to a semblance of normality, where I’m not tripping up over wires and paranoid about oxygen saturation levels.
So, what is it like to have a baby constantly on oxygen? Stressful and frustrating is the main answer:
I don’t know when he’ll get off oxygen or how best to wean him down;
I’m worried he’s not getting enough oxygen at times and could be exposed to low oxygen levels and in an extreme scenario, develop brain damage;
Every time his oxygen alarm goes off at night I have a heart attack (usually because he’s kicked off his monitoring probe);
It just seems like something he’ll never grow out of (although I’m sure deep down he will);
Every time he has a coughing fit and I up his oxygen requirements a little bit, I feel like I’m taking a step back;
I can’t expose him to children who may be ill, so play groups are a no no;
I’m constantly tripping over wires at home & when out and having to rely on portable oxygen canisters;
I just want our lives to feel ‘normal’ and for him to catch up with his boisterous toddler buds;
Finding childcare is hard. I can’t put him in nursery or a childminders and I haven’t found a babysitter yet, so my husband and I have been tag-teaming going out in the evening. It would be nice to have some quality time back.
It’s good to talk about it and good to explain to others that living with a baby on oxygen is tough, but also not the end of the world either. I’m lucky that now I have a predominantly happy, wonderful toddler who has overcome some rather large hurdles in his short life. The daily rigamarole of physiotherapy and nebulisers have crept their way into our lives and it is our normal for now. I want others who have their babies on oxygen that there are other people going through it and let’s all hope it doesn’t last indefinitely (as it feels like it could).
Running Nurturing Mums postnatal group has meant that I have raised awareness of what the realities are like of living on oxygen, and I hope it’s a dialogue that continues, even though I know some people may feel like it’s a difficult subject to discuss when they see my son hooked up to all his tubing.

Lucinda Hutton

North London born and bred mum of one. Passionate about postnatal support and owner of Nurturing Mums postnatal courses that run in Hampstead, Islington, Crouch End & East Finchley - nurturingmumsuk.com.

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