I’m in Auckland visiting friends. I used to live here, what feels like a lifetime ago, and I still have quite a few friends who live here. One of these very good friends decided to fly me up to spend some of the school holidays with her and her family. This friend is one of those special people who you just want to keep in your life. She came to Wellington for Eva’s funeral and stayed with me, doing little things to make things run smoothly. She goes out of her way to make things just a bit easier for me. She’s kind of the best.
The last time I was here was with Eva at Starship hospital. The night before she was due to come and live with me I got a call at 1am from her foster mum. Eva had been having trouble breathing and she had rushed her to the emergency department. Eva and I spent the next two weeks in Starship. It wasn’t the home coming I had envisioned, but I had been so grateful to be with her at that time. This same friend had picked me up and taken me to her home and fed me, dropping me back off at the hospital a little revived after long days sitting by Eva’s bed.
Being back in Auckland again, staying with my friend, but without Eva feels strange. It’s not the same city that I used to live in as a twenty-something. It feels different because I’m different and because now, having seen what I’ve seen, and knowing about all those sick kids and their families in another world at Starship and Ronald McDonald, I can’t feel the same about this city. I’m not oblivious anymore and I don’t want to be.
Now that Eva is gone it strikes me as so amazing that when I was here last I was so sure she would be ok. We were flown by emergency jet to the Paediatric ICU in the hospital where the sickest kids get sent to, and still I was so confident Eva would be fine. I was scared, sure, but I knew she was in the best hands. Even when she was intubated and the machines were breathing for her, I didn’t see any other end to that visit than me and Eva coming home together. It seems crazily optimistic now. Naive. Foolish even. But I just didn’t see it going any other way.
It came as a big shock, then, when the paediatrician pulled me aside just when Eva was starting to get better and told me what our future could look like. He explained that babies like Eva who get in this kind of breathing distress often spend increasing amounts of time at Starship and being intubated. He said while it might not happen, I should be prepared for that. For my winters to be spent at her bedside and for her to be sick. A lot. For sickness at this level to reduce her quality of life dramatically. For her development to stall. For her lungs to develop lung disease due to the repeated infections.
He explained that if this became the case, over and over, that I would need to think about whether they continued this level of intervention. He said at a certain point I would need to weigh up Eva’s quality of life with the interventions they had to make in order to keep her alive. I would have to decide if we continued down this path, over and over again, or if I made a choice to stop us.
I am so thankful I never had to make that decision.
When Eva was in the NICU as an infant I had written to the hospital, with my family’s help, so they knew they weren’t to undertake any major procedures or life saving measures without consulting me. It felt like I had lost control over the process. I wasn’t staying at the hospital, and I went home each night, leaving her there. It was as if Eva was not my baby, but the hospital’s. I wanted to ensure that they took my voice into consideration. That they didn’t just prolong her life for the sake of it, if that was what it came to, or did anything drastic without talking to me first. That decisions could be made by me if they needed to be rather than having to deal with those actions in the aftermath. That Eva’s life was not seen as a heart monitor and oxygen saturation levels on a machine, but as a whole and complete entity that was multifaceted. It was not enough just to keep her alive, her life needed to be considered from all angles.
I am so thankful those decisions did not need to be made.
But I like to think I would have been strong enough to put Eva’s quality of life first. Before my emotional pain. Before the gut wrenching urge to do everything it took to save her.
When Eva was being resuscitated the night she died, they came and told me her heart had not been beating for 20 minutes. I panicked. I knew what that could mean for her. For her brain. For her life. I looked around desperately and tried to tell the paramedics about what this doctor had said to me at Starship. How they had said, even then, when she was getting better, that it might not be in her best interests to do everything they could to bring her back. To give her breath.
I so desperately wanted her to be ok. But bigger than that, I didn’t want them to bring back my daughter if she had not been breathing for 20 minutes. If her heart had not been beating for 20 minutes. The baby they brought back might not even be my Eva. I was fighting a battle in my head between doing everything necessary and knowing when enough should be enough. I wanted to save her of course, but not if saving her meant making her life worse. Bad. Not worth living. But where you draw the line on that is always going to be contentious. Who am I to decide? Well I’m her mother. If I can’t make an impact on that decision, no one can.
But, again, I didn’t have to make that decision. And for that I am thankful.
The paramedics had their protocols, and 10 minutes later they gave up of their own accord. I never had to decide what was more important, her being alive, or the quality of that life.
I will be forever thankful I didn’t have to make these decisions. I am also happy that her quality of life for most of those 10 short months was very high. Aside from that main hospital stay, and one other less drastic stay, I kept her out of the children’s ward fairly successfully. She got to be a baby in her home with her family, both biological and otherwise, without major interventions every day. Anyone who met Eva could attest to the quality of life she had, which was amazing.
I think about this now, because I’m in the city where I was told I might have to make those decisions. At the time I said I wouldn’t blog about it. It felt like a self fulfilling prophecy. I didn’t want to write it, for fear I would make it come true. So I didn’t. But I’m saying it now, because I know in this city, right now, and in cities all over the world, there are parents having to worry about their children. And driving through this city, seeing that hospital in the distance, I feel myself back in my body looking over Eva’s bed. I feel tears rolling down my face after the doctor had his talk to me. I feel the nurse looking on, concerned, and shutting the curtain for me so I could have some privacy with my girl.
And it still feels very real. Very raw. So in this city, tonight, I’m sending a virtual hug to every parent looking on over their sick kid, wishing they could take that pain away. Hoping for them that they never have to make that decision, and that their babies get better. It feels overly optimistic now, but sometimes it’s easier to push ahead with optimism until you cannot ignore the reality any longer.