"She's not going to survive"
You may have seen that Ian has been invited to Westminster for the parliamentary launch of baby loss awareness. You may also know that this is because he’s been working with Sands to help improve the bereavement care pathway. However, this morning it dawned on me that we’ve never really elaborated on why he’s doing that. We’ve never told the story of the day we were given “the news” that every parent dreads.
On December 28th, Ian and I went to spend the day with Pippa. With it being Christmas just a few days earlier, we hadn’t been able to spend as much time at the hospital as we normally would have. Evelyn was off school for the holidays, we had family visiting and my grandparents were both in different care homes. We had this day pencilled in the diary so we had absolutely no other conflicts, so could spend our whole day there, instead of a few hours dotted out across the day. As we arrived on the ward, from the moment we laid eyes on Pippa, we could see that she was having a really bad day. She was working incredibly hard on her breathing and just looked exhausted. If you remember, at the time, we had said that her reduced liver function meant that her blood didn’t clot well at all, so even heel prick tests took a lifetime to stop bleeding. It looked as though Pippa had caught another infection, and was bleeding somewhere inside.
As the day went on, she became more and more listless, and her oxygen requirements had gone right up. By late afternoon, the nurses decided that she needed more help with her breathing, so she was being put back onto high flow. This process proved to be more difficult that planned as the whole set up needed changing, and the liver ward weren’t really equipped for having such a tiny baby needing as much support as she did. The room filled with nurses, as they tried to change her breathing equipment, and in the interim, helped her breath by pumping a bag for her. In her usual ‘centre of attention’ style, Penny decided to fill her nappy right then and there, requiring a complete outfit change. So, I laid her in her pram in the corner of the room and set to work as the nurses continued their work and Ian watched over them from her bedside. It was in this moment, as the room was filled with nurses discussing how to change Pippa’s equipment while they manually pumped air into her lungs, as I struggled to change a naked baby who was covered in poo, that the consultant leant over my shoulder and said “Mum, I think Pippa’s treatment has come to an end, she’s not going to survive.” Just like that. No, “shall we go for a chat outside?” No “Let’s all sit together and discuss…” No “let me update you on what’s happening.” Ian had no idea what was going on, he just heard me hysterically asking the consultant what he meant. The consultant, who never bothered to learn our names, gave us the worst possible news we could receive, without a second thought about the environment that we were in, or that Ian and I were on different sides of the room. Ian was all but completely excluded from this conversation, and the consultant mostly had his back to him as he spoke. He said we needed to make a decision. I asked “What decision? What are our options?” to which he basically replied that there weren’t any options, they could ventilate, but it wouldn’t help. At this time, my head was totally spinning, I couldn’t understand what the doctor was saying, how could I decide on something without having any options to choose from? What possible decision did I have to make? I asked him again, telling him “I don’t understand what you’re saying. What decision do we need to make?”, and he replied in the exact same way as before, pretty much word for word. He didn’t offer a different explanation of what was happening, or explain anything in simpler terms, just “there aren’t any options.” We seemed trapped in this cycle of “I don’t understands” and “we need to make a decision” for hours, although I suspect it was just minutes.
Time stood still. I can’t really remember much of what happened next. The consultant left, and slowly, as Pippa’s breathing settled down on her new equipment, the nurses left too. I remember that nurses kept offering to take Penny and look after her, which, although a very kind offer, was really not what I wanted. I was already losing one baby, there was no way that I was letting the other out of my sight.
We were eventually taken into the parents kitchen for the ward, where the liver consultant sat us down with a consultant from PICU, who then took the lead and explained exactly what was going on. The infection that Pippa had caught was the proverbial straw that broke the camels back. It was just one infection too many, and her organs had begun shutting down. Her body had begun filling with fluid, and it was putting too much pressure on her lungs; she wouldn’t be able to breathe without support. There was an option to put her on a ventilator, which would prolong her life slightly but that wouldn’t change the outcome in the long run, and it would mean that she wouldn’t be able to be held in her final days. Ventilation also came with a number of risks. With her being so small, it’s not an easy task, and it also carried the chance of her bleeding heavily, should she have the slightest nick as the tube passed into her lungs. Everything now made sense in medical terms at least. A calm environment where we could sit together, with a consultant who spoke to us as parents and human beings with feelings, as opposed to a dark, chaotic room with a consultant who spoke in riddles as he stood between us.
We had spent 4 weeks in Sheffield’s Jessop Wing and 4 weeks in Jimmy’s NNU with the twins, and a further 10 weeks on LGI’s ward when Pippa was readmitted. Although the time we spent there was far from what any parent wants, the staff had made us feel at home. They were kind, compassionate and incredibly hard working. They gave us 4 and a half months with our little Pipsqueak, and we are forever grateful to them; but one moment from a thoughtless consultant undid all their hard work, and left us with a bitter taste in our mouths.
The work that Sands are doing, is to improve the bereavement care given to parents across the board, so that every department, in every hospital, has access to the same tools to ensure that parents aren’t left in a situation like ours.