For parents of premature babies, the hyper-real world of the Neonatal Unit with its alarms, wires, medics, medicines, routine, anxiety and love becomes home. It is where they want to be when they are not there and everything about their lives is focused on what happens within. It becomes normal. Whether the stay is for a day or two, or for months, whether it ends in simple triumph or complex tragedy, this odd world becomes the standard and everything else fades. Claire Jenkins, whose brother and sister-in-law had premature twins, took Radio 4 listeners into this world.
Ten years ago the NNU at St George’s in Tooting became our home. We weren’t there physically 24/7 but in any meaningful sense we never left it. Our boy, sixteen weeks early, was there. When we sent the first picture round to our friends of him they didn’t know how to react. He was, like all so-early babies, the wrong colour, shape, and size. Wires were everywhere. The photo could not show the alarms, the incubator and medical equipment that surrounded him, nor the near-permanent waves of staff watching over him, testing him, monitoring him. So for him, so for everyone else.
In The Incubator, we heard from several people, parents and staff, who had been through it all. A Sister explained that when she shows potential nurses around she asks them to remember how alien and terrifying it feels the first time. “Mum will feel that every time,” she said, “Remember that.” Another parent recounted the brilliance of the surgical team, the warmth of the staff, the need for constant vigilance. Alarms beeped in the background all the time. A father spoke of how, when the time came, his son who had fought so hard for three weeks came to die. Not every story has the right ending but the pride and love a parent has for their child shone through.
This was a smart programme, bringing together many involved voices, that showed those outside what its like on the inside. It didn’t flinch from some of the hard questions about cost and benefit in this controversial area of medicine but it answered them as wisely as a programme so obviously sympathetic could. Nobody got out a calculator but, also, nobody said it was wrong to ask.
Our own experience in the neo-natal world ended four months after it began. Our boy came home. On the day I listened to The Incubator I was watching him have a routine eye test and he spent most of the time worrying about what sweets he would take into school to pay for his non-uniform day to come. He’s autistic and likes One Direction. I know what concerns me more. He has turned our lives upside down because it’s impossible to go through an experience like this and not have that happen.
The Incubator was a personal reminder that we were never alone but that our experience which we now think of as ‘just what happened’ was not the norm and needs explaining.
It was effective, brilliant radio.