The cost of having a premature baby is substantial. First, there’s the cost incurred by the NHS for life-saving medical care. Then there’s the emotional cost to parents. This is hard to quantify. All I can say is that it is hefty. Life-alteringly hefty. My blog is in part an attempt to explain just how emotionally costly it is, even though I know that the pay-off is huge.
But there are other costs, too. More tangible, grubby little ones. And they can put an extraordinary pressure on you during what can be one the most difficult times of your life.
This was our situation…
Nearly two years ago I went into labour without warning, at work, 11 weeks early, 65 miles from home.
I was given a choice of which hospital I wanted to go to. Fortunately, despite my fear and ignorance of prematurity and local geography, I picked the one with a level 3 NICU (an acronym I didn’t even know at the time).
I have nothing bad to say about the hospital, where he stayed for 2 weeks before being well enough to transfer to another 10 minutes from home for the next 4 weeks. But the costs of our stay (a relatively short one considering how very premature Boo was and the complications – meningitis, brain bleeds – that ensued) were extraordinary.
With a heavy heart, and convinced it was the wrong thing to do (but there was no right option, I now see), I was discharged from the hospital the morning after giving birth to Boo, despite being considered twice for a blood transfusion.
Why did I do it? Well, as I’ve said before, I couldn’t help Boo and The Grumposaur, and more importantly Sissyboo, then only four, really needed me and asked me to come home. They were scared. Their world had been turned upside down. There wasn’t anywhere practical or affordable all of us could stay in or near the hospital.
To complicate matters further, my partner is self-employed and was about to embark on his busiest work project of the year. He had worked on it for 11 months. It would take him away for nearly 2 weeks. He had to work. It was his biggest pay cheque of the year. Self-employed fathers don’t get paternity leave, although that would only have seen us through a third of our NICU stay anyway. If self-employed people don’t work, they don’t get paid. And we needed money more than ever.
First, I had to buy a breast pump, so I could supplement pumping done on the NICU and build up a supply of breast milk for Boo that everyone told me was vital to his survival and development. And it had to be a good (that is, expensive) pump as my body (still in shock) wasn’t really ready to do this. The hospital had none to loan out. They had three broken ones on the unit that hadn’t been repaired on the grounds of cost. £120 had to be spent.
Every day, often on my own, sleep deprived, driving through tears, I drove a round trip of 110 miles to see my little boy. One day, when I feared he might die, I did it twice. The fuel costs were astronomical. Hundreds of pounds in two weeks, despite me having an economical, sensible car. In the first three days, I spent £60 in hospital parking charges before a NICU nurse told me we could get a discounted weekly permit for £15, although sometimes the men who dished them out we’re reluctant to do so as people tried to work the system, so I should ‘look stressed’ (not hard) and get them to phone the NICU if they contested it.
And then there were food costs. The hospital canteen food was OK, although I would have happily not eaten it. But I needed calories for milk supply and to help me stay awake to be safe on the roads. I tried only to have one meal and a coffee in the canteen every day, but it soon mounted up in price. Perhaps I should have made a packed lunch, I hear you say. But this was no picnic I was headed for. I could barely string a sentence together or see in my peripheral vision. I was just surviving. The fridge was bare (Sissyboo was getting two meals a day at nursery or eating in the canteen with me when she wasn’t). I couldn’t have summoned the will to make a packed lunch if I’d tried.
The costs reduced significantly when we got closer to home and parking became free (one of the few perks for NICU parents of the hospital we ended up in – I have since sunk a small fortune in one to three weekly visits there since discharge). But this NICU didn’t provide nappies or cotton wool for prem babies as the other had and seemed cross I hadn’t brought any with me after he was transferred (with only a couple of hours; notice) arriving at eight in the evening. I sobbed when I realised what a rubbish Mum they thought I was and went out to buy nappies at 6:00 the next morning. Preemie nappies are, of course, very expensive. Only one shop, 8 miles from us, sells them. I live in a town with several chemists and two supermarkets.
I can see that some of these costs are unavoidable, but meeting them can be difficult for the parents and families of babies born too soon or sick. Meeting them when you are in such a vulnerable state makes a difficult situation worse. Having to let your partner work and each go through this intense experience separately is impossible for both parties. It’s a miracle we are still speaking to each other, to be honest.
But we are and we met the costs. It was hard, but what choice did we have? Others are not so fortunate.
This is why I am supporting Bliss’s Thunderclap It’s Not a Game Campaign, which is campaigning for better provision for the families of premature and sick babies to help them through this difficult time. It is easy to give your support to this campaign, by visiting their Thunderclap page and using social media to affirm your support.