I apologise in advance for the sombre content of this post. I’ve been using this blog as therapy this week and I just really need to write and get everything out of my head.
I’ve been asked so many questions this week.
I’m used to being asked questions; having a baby on a neonatal unit is such an alien concept to most parents. They don’t know what the various wires and pieces of equipment are for, they’re unsure if they can touch their baby or whether we allow visitors.
When I meet new parents I always tell them that they can ask as many questions as they need, as many times as they need. I know there’s a lot of information to take in and sometimes they need to ask a question two or three times before they’ve properly processed the information. I tell them that there is no such thing as a silly question; that if it makes them feel more confident and at ease with the situation then there’s no way that it can be silly.
“When can they come home?” is the question I think I’m most commonly asked.
Usually the answer to this is “Around the time that they were actually due” although this is only the case if the baby doesn’t develop any other health problems in addition to being premature.
For the rest of the babies I tell the parents that the baby will let us know when they’re ready to go home; that the decision is completely down to the baby. This is completely true as in some cases we are completely guided by the baby who will progress as quickly or as slowly as theey chose and nothing that we do will change that.
This week the questions have been more difficult; both to be asked and to try and answer.
Some are questions that I have the answers to.
“What happens when we take out the breathing tube?”
“Can I carry on cuddling them afterwards?”
“Will they be in pain?”
“Will you stay with me?”
But I’ve also been asked many that I don’t know the answers to.
“How can I let them go?”
“Why has this happened to us?”
”How can I carry on without them?”
“How do you say goodbye to your child?”
The questions that I can answer aren’t any easier than those that I can’t but at least I have an answer to give; something meaningful I can say.
Some of the questions just can’t be answered with words, the words just don’t exist. I try not to use clichés or rehearsed phrases but even when you speak from the bottom of your heart anything you do say sounds empty and trite.
Sometimes silence is the best answer, not futile words said to try and ease a pain that you can’t begin to imagine.
An arm around the shoulders, the offer of a hand to hold, an all enveloping hug, sometimes these are the best answers.
Three times this week a parent has asked me if their baby is going to die.
In two cases I’ve had to say yes.
Knowing that as soon as the word leaves my lips the parents face will crumple, tears will flow down their cheeks and I will be helpless to stop them.
In most cases, deep down the parents already know the answer to this question and although the answer comes as a shock it is not due to surprise at an unexpected answer.
Instead it is the shock of having their worst fears confirmed with one small word.
A word that is one of the simplest in any language, one of the first that we learn to use as very small children.
A throwaway word used millions of times a day around the world as the answer to the most mundane of questions but for these parents, here and now it’s bought their world as they know it come crashing down around them.
Never did I think that I could cause such devestation with one word.
I try not to be blunt but equally I need to make sure that there isn’t any confusion; that I don’t give hope where there is none by being vague with my words.
I’ve seen the look of confusion on parents faces when a doctor has tiptoed around telling them that we have run out of things we can do to save their child. Their expressions swing between hope and despair as they try to understand the meaning of what they’re being told.
Sometimes this leads to more questions, slowly and painfully eking out a clear answer.
Sometimes it doesn’t; the parents knowing in their hearts what they will eventually be told if they continue. Instead they choose to continue in this state of confusion because it gives them the tiniest glimmer of hope that maybe, just maybe the answer might not be what they think it is.
That maybe if they don’t ask that final question…
If they don’t ask about the eventual fate of their child in blunt, harsh words..
If they don’t hear that one word, setting out reality in stark black and white…
Then maybe it won’t come to pass.
Maybe their child will continue to fight on.
Maybe a new treatment or medication will be found to save them.
Maybe we will discover that if we just do one more thing then their child will live.
So many questions.
So few answers.
And that one word.