Nothing makes you feel as useless as a sick child. Generally, we go on doping about through life thinking we're doing a decent job at it. At some point, we have all thought we were one of the "having it together" people. Maybe it's working out your tax deductibles or getting the cheapest possible Ryanair flight for the right dates, with bags. It might be because you're one of the smug brigade, remembering to take reusable bags to the shop every time. But then a little person you loves gets very sick and there's nothing you can do to help.
That happened to me last year when my one-and-a-bit year old nephew’s heart nearly gave out on him.
It turns out dilated cardiomyopathy doesn’t care if you remember to return people’s Tupperware or if you nailed an interview or in my case, you had just been offered a dream job in television. Unless you’re a paediatric cardiologist, your skill sets count for nothing. You have to sit on the sidelines and watch a tiny chest be filled with tubes and needles. You hope the kind nurses who come by to read numbers on machines know what they’re doing because you certainly don’t.
At best, I'm a haphazard aunt, rocking in late to family gatherings vaguely hungover
My youngest nephew, Anthony, snuck into our lives really. He was the fourth child of the family. His elder sister had been the first of the new generation, had been the first great-grandchild, the first new baby in more than a decade for the aunts to fight over holding. By the time Anthony showed up, he couldn’t even claim to be the only boy. His brother had taken that title just over a year earlier. He was not even my first godchild, I didn’t buy a new outfit for his Christening. He was the quietest and easiest kid. As such, he was prone to getting lost in the noise and clatter of my lovingly chaotic family events.
At best, I’m a haphazard aunt, rocking in late to family gatherings vaguely hungover with some kind of grocery store offering I panic bought on the highway out. For their part, my family have graciously accepted this, with Mum usually showing great restraint and asking what time I got home in a judgmental tone of voice only once.
I will lie. She knows it’s a lie. I know she knows it’s a lie but doesn’t have the evidence to call it out. Instead, we move on to mutually agree on the moistness of some aunt’s cake. (I don’t know much at 28 but if someone makes a cake you must compliment it as moist, always) I sometimes forget birthdays and sometimes mentally backdate my nieces’ age to whatever boyfriend I was dating at the time they were born so I can select the correct birthday card. “It must have been 2012 because I was dating the semi-pro boxer who had an unfortunate dent in his head.”
I don’t know what to ask kids to start a conversation, with housing and work rudely taken off the table. I don’t know what to buy people when a baby is born. What size clothes they should be in at what age. What age they should be walking or talking. I have nothing to contribute to conversations around sleep routines. I treat them the same way I treat manual cars – I have a nagging guilt I should have some knowledge about them but seeing as I’ll probably never own one, I don’t go out of my way to learn more.
But then Anthony got sick and suddenly I gained a grim expertise in how fragile little people are. How many things can go wrong. He had the flu, we all did. Thank God my sister-in-law trusted her instinct and brought him to the children’s hospital. “It’s probably nothing but can you check just in case.”
Not been out of hospital
Bar a handful of days, he has not been out of hospital since. That was exactly one year ago. Things snowballed from there. His liver swelled. He would need a heart transplant. Other children went home in his ward, he stayed. I watched my sister-in-law and mum fight on with no sleep, juggling three other children, school excursion notes and car pool rosters with a tired but unending maternal energy all mothers possess.
In my nephew's ward there have been no heart transplants for a number of months <br/>
My brother, so proud to be in full-time work since he was 16, had to quit his job, fill out unemployment forms. Irrational thoughts crept in – if I had been a better aunt would this have happened. The family had to move to a state 12 hours’ drive away to the only team who does heart transplants this young. My parent’s delayed their retirement, Mum staying in the bank teller job she’s been too smart for over 30 years. Every phone call from home is answered, fearing the worst. Updates on blood clots and surgeries are given as I drive between jobs. I have worked out which disabled bathrooms are private enough to cry in.
Now we are a family waiting for a heart transplant. It’s the darkest waiting rooms to be in. There is no way to dress it up, we are waiting for a donor heart. We are waiting for someone else’s child to die so that ours can live. It’s both a practical and horrible place to exist in. I wouldn’t wish it on anyone else.
But from being on this side of the fence I would like to encourage conversations about the worst. In my nephew’s ward there have been no heart transplants for a number of months. In 2018, there were 2,000 children on the organ waiting list – however, last year there were only about 800 donors. The deficient is not a number, they are children, they are families. Some run out of time. A child dying is the worst thing that can happen to any family. Then in the middle of the grief and goodbyes, they’re asked if their baby can be an organ donor.
It might seem like too much, taking from them again when they’ve already suffered the biggest loss. The decision has to be made on the spot. Organs are impatient, they need to be transplanted in hours. So the answer is usually no.
Which is why the conversation needs to happen not in the hospital corridors. They need to happen at calm breakfast tables and on couches during Love Island. One donor can save eight lives. It’s a big ask to imagine the worst, but it’s important to ask if it came to it – could you? Would you donate?
Families like mine depend on the answer.