I frequently hear parents on the unit say that they didn’t know it was possible for a baby to be so small.
It always puts me in mind of a specific baby that I cared for a few years ago, the tiniest baby I had ever seen before or have since.
Before we even got to the operating theatre we knew this particular delivery was going to be difficult for everyone.
The medical team
The twins were being delivered early and were known to be compromised due to Mum having sickle cell anaemia which had severely disrupted their blood supply and development.
We knew both twins would be tiny, very sick and that by delivering them the smaller of the twins was unlikely to survive.
We also knew that by leaving the pregnancy to progress it was almost certain that we would lose both.
The consultant had already been to speak to the parents to tell them this and eventually they had agreed to deliver the twins early although they had refused any steroid medication to help develop the twins lungs.
To this day I still don’t understand why.
There were two neonatal teams in the operating theatre consisting of two neonatal nurses, a doctor, a consultant and a midwife; one team for each of the twins.
I was on the team receiving the smaller twin who was estimated to have a birth weight on 400 grams or less.
Approximately the same size and weight of a can of coke.
Even if she survived the delivery she was so small that she was incompatible with life.
As cruel and clinical as that sounds we knew that there was no way that she could survive.
Neonatal technology can do amazing things and can save babies that even 10 years ago would have had little hope of living but we have limits. Nature needs to provide us with starting point that we can work on and sometimes we just aren’t given that.
I can’t describe how heartbreaking it is to see a baby struggle for life and know that anything you try will ultimately be futile.
She lay there under the harsh lights of the operating theatre, in the first few seconds and minutes of life, not breathing but gasping.
A base animal reflex triggered by the brain stem.
A last ditch attempt by the body to try and force the tiny, catastrophically under developed lungs to work.
It may look as if they are trying to breathe
Trying to live but they aren’t.
This is something that happens with many extreme preemies and the parents are so desperate for their child to survive that they cling to the smallest signs of life.
I’ve read more than one story published in newspapers and magazines where the parent is adamant that their baby was alive and breathing and insists that the neonatal team killed them when they refused to resuscitate.
In most cases the consultant failed to communicate properly with the parents but in some cases the parents just can’t accept that it was impossible for their baby to live.
That we have to draw the line somewhere.
This little girl was so tiny that the 2mls of Surfactant, a medication given directly into the lungs to help them expand completely overwhelmed them and bubbled out of her mouth.
Even our tiniest hat didn’t fit her.
Our equipment designed specifically for these tiny, fragile babies was just too big.
She was just too small, even for us.
But she was here.
Even if it was only for a few seconds or minutes or hours she was here and she needed us to care for her; to be as gentle as possible and to take away her pain as much as we could.
Through it all we talked to her, welcoming her to the world and telling her what we were doing.
We shielded her eyes from the bright lights.
We called her sweetheart
We told her that she was brave.
We told her that her parents were nearby as was her twin brother.
We apologised for hurting her when we inserted the breathing tube, after her parents insisted that we did everything to save her.
We didn’t want to resuscitate her, knowing as we did that she was just too tiny to live. We didn’t want to subject her to painful procedures that were ultimately useless, wasting those few short minutes that she could have spent snuggled in her parents arms.
The consultant asked us if we thought we should stop.
Our agreement was instant and unanimous.
He went to speak to the parents, to tell them that just as we had feared their daughter was not going to survive; that we had done everything that we could and that there was nothing left in our arsenal of weapons to fight for her life.
He came back and told us to carry on.
That the parents still wanted everything done even though we as professionals knew that anything we tried would be useless.
To this day I still think his decision was weak.
He had the opportunity and the authority to end this little girl’s suffering; to gently but firmly tell her parents that there was nothing else that we could do.
Instead he ignored our views as a medical team and insisted that we carry on rather than risk conflict with the parents.
I thought less of him after that.
I don’t know for certain but I’m fairly sure she died on the way up to the unit.
We ventilated her as best we could but it wasn’t enough.
Nothing that was in our power would have been enough.
The ventilator breathed for her, forcing air in and out of her lungs and this caused her tiny heart beat slowly but it wasn’t a sign of life, just a reflex.
She was gone.
Although the ventilator stimulated her heart to beat a little it couldn’t give her life and neither could we.
A shadow was cast over the whole unit, knowing that she had died before she had even lived.
We placed screens around her incubator to try and shield the other parents in the room who sat watching their own babies fight to survive and fearing that this day might come for them.
The Grandparents arrived and prayed but they prayed for her to live, they didn’t understand that she’d already gone. They associated the ventilator with life and even though we tried to explain they either couldn’t or wouldn’t hear what we were saying.
The parents didn’t come.
In their hearts they knew what we would ask if they did.
Their permission to switch off the ventilator and let their daughter be at peace.
In the evening, many hours later one of the senior nurses snapped at the unfairness and futility of t all and dragged the consultant off to find the parents and speak to them. They finally managed to speak to the parents to tell them as gently as possible what needed to be done.
That we had tried our hardest and used every intervention at our disposal but that their daughter had made her own decision to stop fighting.
They eventually agreed and they stood beside their daughter’s incubator when she was finally allowed to be at peace even though it had been a few hours since she’d died.
They didn’t hold her.
I don’t know why.
I don’t understand so many things that happened that day.
Why we began to resuscitate when we realised exactly how small she was.
Why we didn’t stop when we’d agreed that it was for the best.
Why the consultant insisted on listening to the parents even though they what they wanted was not in the best interests of their little girl.
Why it took several hours and a nurse losing her temper before we finally managed to get the parents up to the unit.
Why they wanted everything done for their daughter and yet didn’t want to be with her at the end.
I don’t understand.
She was just too small.