Our midwife Amy wanted to give us our privacy but told us to press the buzzer if we needed anything; then she left us alone. We tried to get some sleep that night but the best we could do was snooze even though we were completely and utterly exhausted; mind, body and soul. My brain was consumed by our current predicament. My husband Dave lay by the side of me in an arm chair and I worried that he was comfortable; he couldn’t have been.
It was the early hours of the morning when the neonatal team came to see us. We had been warned this would be the case as they were having a very busy night, but we said we were okay with that. I couldn’t have waited until daylight to speak to them, it would have sent me over the edge! This was the only team that we were yet to see and we hoped they might tell us something different; we weren’t exactly sleeping anyway. We’d wait.
The time came and they stood in the doorway while Amy came into the room to let us know; so we sat up in our bed and chair, somewhere in between sleep and awake, and invited them in. Very fuzzy headed, I smoothed over my pyjamas in an attempt to mentally prepare myself for the conversation.
If my memory serves there were a number of NICU staff present; possibly three, but the only face I remember was the senior Doctor on duty; a very nice man who was about to give us the worst piece of news that we’d ever received; and no amount of pyjama smoothing or hair tidying could have prepared me for what he was about to say.
Our previous conversations with obstetrician Dr Ali and others were awful; they spoke about the very real possibility of our baby being born at 23 weeks gestation; how they didn’t have a way to prevent this from occurring (if it was going to happen naturally) and how a baby born this early would have an incredibly difficult fight on its hands to survive. As heart breaking as all this was to hear, I think that deep down inside of me somewhere I believed that our baby might prevail because inside the womb there was absolutely nothing wrong with her. She had no health issues at all; she was strong and most definitely thriving and this gave me the strength to go forward. Her healthy condition inside the womb had also previously led me to assume that she would be born alive, but my assumption was incorrect and we were told that she may not be. Another reason that I had a little ray of hope that our baby could succeed was again because I assumed she would be provided with immediate medical support after birth to give her the best chance possible of survival. I mean, she was a 23-weeker after all, and she was a healthy foetus. But I was wrong about her chances of survival.
The team introduced themselves and we got straight into it. I can see the Doctor now; standing straight in front of me with his colleagues either side of him. I can’t remember how he started the conversation but I will never forget what he said. I could tell that having this chat wasn’t easy for him (I mean who would find it easy?) and I felt for him having to be the bearer of bad news.
He explained that 23 weeks’ gestation is incredibly early for a baby to be born and that the prospect of survival for a foetus born at this stage was very unlikely. We had of course already been made aware of this; but then he took us into new territory. He informed us that if our baby did arrive at week 23, he or she might appear fully formed on the outside, but it’s likely that some or all of his or her internal organs would not yet be. He went on to say that one of the biggest problems for a baby born at 23 weeks’ gestation (a “23 weeker”) is its lungs; and then he dropped a bombshell; a piece of information that we were completely unaware of but one that painted a picture so clear; a reality so bleak that it makes my hair stand on end now as I’m writing about it. His words completely opened up my eyes to just how grim this situation was. He said:
“A foetus isn’t considered viable for life outside the body until 24 weeks gestation!”
Bam! There it was. He went on to say:
“this is because not until week 24 does a vital function kick in within the lungs making them compatible with air. At 23 weeks’ gestation a foetus’ lungs are still water based; inhaling and exhaling the fluid from the amniotic sac as breathing practice. A baby born at 24 weeks gestation has a much better chance of survival.”
At this point in time the vital function that he spoke of had not yet kicked in within Edie’s lungs and it wouldn’t do so for another five days! She was still just practising.
I felt sick. The impact of what he had just told us felt like a physical blow to me and I sat stooped over, deflated. The panic and frustration of having no control over whether I could keep her inside for at least the next five days just consumed me; and the injustice and unfairness of my poor baby’s situation broke my heart. She was well for God’s sake, so why was she being treated so unfairly?! I mean, if she could just stay in she’d be healthy and happy; but she seemed to be coming out and life would be taken away from her instantly.
The blows kept coming:
“the earlier a baby is born the less chance of survival it has. At 23 weeks’ gestation a foetus has a maximum of 20% chance of survival and at least 50% of the babies that survive at 23 weeks will have moderate to severe disabilities. At 24 weeks’ gestation the chances of survival increase to around 35%, almost double; at 25 weeks’ gestation survival rates increase to 55%, and so on. You see?”
I replied, “but Doctor, how can just 5 days make so much difference to his or her chances of survival? It’s only 5 days. It’s so close and yet we’re in this position.” He said; “To us, 5 days seems to be no time at all but inside the womb every minute; every hour counts; as changes and progression constantly occur. Every day that your baby stays inside the womb, the chance of her survival will increase.”
My mind swirled and I began to think out loud; “so her lungs are not ready if she were to come out now? Until week 24 when a vital function kicks in within them?” “Yes”, he said.
Before speaking to the NICU team I had been looking up anything that I could find online that would possibly help, and so I asked “what about steroids to strengthen her lungs? Can I have a steroid injection to help her in case she does come out before week 24?” He looked at me kindly and said, “If you demand steroids we will give them to you, but first you should consider whether you are trying to sustain a life that is unsustainable; and you should also consider whether you would be prolonging the agony for the baby and for yourselves.”
His points were fair, but I felt like he had just punched me in the chest. I understood where he was coming from, though; I didn’t want to be responsible for prolonging any pain or suffering to my child and neither did my husband; but how were decisions like this now a part of our reality? I had done everything right during my pregnancy!
He continued: “you see, the lungs are not the only problem; his or her brain is still very much in the developmental stage; it’s very young indeed, and a foetus born this early is susceptible to bleeds on the brain which can be fatal or lead to long term neurological damage.” He went on to explain: “the gut can also be a very big problem in babies born this early as it’s very immature. It’s not yet ready to function and at this stage serious and fatal infections are common. There are many, many problems that a foetus of this gestation can encounter.”
It was clear that it wasn’t hospital policy to automatically administer steroids for the lungs, and magnesium to mature the brain, of a baby estimated to be born at 23 weeks’ gestation, for the reason just mentioned; and so I asked, “well doctor, what if he or she is born today or tomorrow? What would be the plan? What would happen?” And he looked down at me with pity and said, “then she would be considered a late term miscarriage.” “A miscarriage?” With a sympathetic expression across his face, he said, “Yes.”
I didn’t understand it. I thought a miscarriage was the body’s way of letting go of a foetus that isn’t viable (as awful as that sounds) but my baby was viable; she was very well and if my body wasn’t pushing her out she’d be completely fine in there.” She was really healthy and this just didn’t make sense.
I had nothing left; no strength; and I was out of questions and avenues of hope. They’d all gone.
It was obvious that at some point in the discussions Dave and I were desperately searching for hope; a ray of light; a way out of this hell for our child; and so the Doctor asked, “if it is possible and it may not be, do you want your child to be resuscitated at birth?”
It was immediately clear that this was the hardest decision we would ever have to make, and the magnitude of it just knocked me for six; to the point where I lost my senses a little, and I’m sure Dave felt the same.
How could we answer a question like this when the nature of it made us a little delirious? And then how could we reach a decision given the conversation that had just unfolded; talk of survival rates; the high possibility of disability for the small number of 23 weekers that do survive etc. And how on earth were we supposed to make a decision of this magnitude right on the spot?! We just didn’t know what to do, but I’ll talk more in depth about this predicament in a future blog.
I keep saying this, but only the day before everything was great and now we were talking about whether we should resuscitate our baby! How does it all go so very wrong so quickly? You can imagine our shock. “We need to talk about this, Doctor; we need time to think carefully about what we want to do.” He smiled at me and accepted what I said, but he pointed out that time may not be on our side.
We were advised that if we decided on resuscitation and it was something that they were able to achieve, our baby would be sent to a neonatal intensive care unit where he or she would be cared for; hopefully for the long term.
There was nothing more to say and so the NICU team left us alone. We sat there silently for a little while; both of us contemplating what had just unfolded; and I turned to Dave and said, “Dave, what about the nursery furniture?” (It had arrived three days earlier and was stacked up against the wall in our hallway.) Dave turned to listen to me with no idea what I was about to say and then the realisation of what I meant hit him. It was written all over his face. He took a second before responding and said, “we’ll donate it to charity, Nic.” “Okay,” I said. I don’t remember much after that point.