I have only been back to Eva’s hospital once since she died. I was dropping off her unused feeding tubes and I dashed in and out without pausing. I didn’t want to pay for parking. I was in the grounds for under 10 minutes and in the children’s outpatients for maybe 30 seconds. I didn’t get a chance to think or reflect or feel anything. I got back in my car and got on with my day.
Yesterday I went back to the hospital for one last meeting with Eva’s paediatrician. I was pleased to get the appointment call, because yes, I did have unanswered questions. As soon as I sat down in the waiting room I felt myself slip. I felt strange sitting there in a children’s waiting room with other parents and their kids. Toys scattered about the play area. Without Eva. I have visited that part of the hospital, and the hospital in general, so many times, but always with Eva in tow. Sometimes in the front pack. Sometimes in her push chair. And when I was feeling particularly strong, with her just in my arms. We knew the halls well. The shortcuts and through-fares. Where to park and how to escape quickly. We knew where to get a coffee, and where not to. Where we could go to feed Eva, and where to go when we just needed some time out and peace. When Eva was sick, she and I literally lived at the hospital for weeks at a time.
It was where she was born, and where I paced about in labour. I remember walking around the rose gardens with my mum and having to stop and brace myself with every contraction. Months later I walked that same rose garden with Eva in the pushchair when we were early for an appointment. Even before she was born I spent many days in that place, having the amnio and talking with obstetricians about terrifying possibilities.
So it felt strange to be there, without Eva. I felt very alone. Surrounded by her absence.
I hated the hospital. Hated our ties to it and how we couldn’t escape it. But now that I don’t have to go back there, sitting in the waiting room felt immensely sad. Eva and I, for better or worse, spent so much time there. The nurses knew her. The doctors knew her. The emergency staff knew her.
I realised quite quickly that my straight forward questions where going to be delivered in between gasping sobs as I sat in the waiting room. I felt that familiar tug at the back of my throat and tried to focus on at least getting in to the doctor’s office before I let the first tears fall.
The doctor had barely asked me how I was doing before I crumbled. I’m allowed to crumble. I’m expected to crumble. So I let myself.
Between sobs, I asked about her last MRI. The one I never got the results for. Her doctor told me a few things were different. Her absent corpus callosum was in fact a partial corpus callosum. She did have one, it was just smaller than normal. Her frontal lobe was essentially normal and the lack of folds that they had identified when she was first born now looked normal. The only other issues they could identify was the presence of grey matter in her brain in amongst the white matter. Her doctor explained this can lead to seizures, something I always feared for Eva, or it could mean nothing.
This news means nothing. So she did have a corpus callosum, it was just much smaller than normal. So her frontal lobe wasn’t abnormal. So she had grey matter where it shouldn’t be. It didn’t mean anything to Eva and by the time she died it meant very little to me. She was still her. She was going to achieve what she achieved, scans be damned. I remember a nurse saying to me when Eva was born, “she is her own person” and I didn’t get it. It felt hollow and meaningless, but I get it now. The scans, the diagnosis, the results, they might help to identify future health issues or areas to keep an eye on, but they mean nothing to the child. They are who they are, just like I am who I am without ever having an MRI to examine my brain. When Eva was born the results meant too much to me. I clung on to them. I dug my nails in. Acknowledging sayings like “she is her own person” felt naive and foolish and ignorant, as if I was turning my back on some elemental truth. That was until I got Eva home and got to know her and realised it was all some imperfect, imprecise joke. The doctors could tell me these results, but not what they meant. They knew little more than I did. But Eva, she didn’t mind. She was Eva, plain and simple. She never saw a scan of her brain or heard doctors worriedly talk about seizures. She just lived. The elemental truth was not hidden in some scan or blood result, it as sitting right in front of me. It was in Eva’s smile and laugh. In her cuddles. Her diagnosis didn’t matter. Her scans mattered even less.
After talking about the MRI we went through the preliminary results of the post mortem. There were things I didn’t know and some that I did. Eva’s lungs and blood results showed signs of an early pneumonia infection. She had a cold at the time, but it wasn’t anywhere near as bad as her previous illnesses. So hearing the word pneumonia surprised me. In saying that, any illness can turn nasty quickly, so perhaps she was on the brink of something worse. Her trachea was inflamed, from the coughing I would guess. But aside from that there was no real cause of death. Nothing to pin it on.
This photo was taken around five hours before she died. I would never have guessed this happy baby had pneumonia in her lungs.
Her doctor also explained that the right sided aortic arch coming from her heart, which was picked up in some of my very early ante-natal scans, had resulted in the aorta pushing on her eosophagus and potentially her trachea as well, although this wasn’t totally clear. This would have made her reflux worse and potentially have affected her breathing.
One side of her heart was inflamed, due to her ASD (hole in her heart) and she had some minor hypertension in her lungs. This I knew about from her cardiologist.
But the kicker, the thing that somehow cut through all of it was something new. Something that explained so much. Her trachea and tubes leading to her lungs were “floppy” instead of firm. Most people’s tracchea is firm, which means when they need to clear mucus, coughing results in the mucus shifting. The walls of Eva’s trachea could be squeezed together meaning when she coughed instead of clearing the mucus, they folded together, preventing her from breathing clearly and clearing her airway. It makes a lot of sense in terms of her noisy breathing and the way illness lingered with her longer than most babies. I seem to remember an ENT doctor mentioning it could be a possibility eons ago, but it was never diagnosed while she was alive.
It seems a pointless thing to get worked up about. Even if they had discovered it there is no way to fix it. As the child grows the tracchea strengthens and the problems caused by it are lessened. In some children, the doctor explained, they have to be on CPAP constantly because it forces the tracchea open with the pressure. Eva was on CPAP at the height of her sicknesses, but the idea of her being on it at all times broke my heart. I know there are CHARGE kids out there in this exact state.
Hearing this additional problem that Eva faced, unbeknownst to all her doctors and carers, made me feel like I was back in the chair when Eva was born hearing the worst of the news all over again. I felt devastated, as if Eva were still alive and having to live with this. I felt again how brutally unfair it is that Eva had so many ailments. So many challenges. Was it not enough that she was blind and deaf?
So many parents of special needs children say they would not change a thing about their child. When it comes to medical issues, like being able to breath without assistance, or eat without worry of aspiration, or being able to sleep without worry of apnea, I would challenge anyone to say they wouldn’t take that part of their child’s condition away. It seems so universally unfair that these children who already have physical delays and intellectual impairments should have to suffer with medical issues as well. I guess it makes sense in a physiological sense. If something happened chromosomally to make Eva the way she was, why wouldn’t it affect the normal functioning of other parts of her body. But at a certain point it just makes you want to yell, “enough!”
I recently heard from another mother of a deaf blind baby. Her son has multiple other issues and has just recently had an MRI which reveals he has a brain tumour. When she emailed me with the details of her son’s issues I felt like hitting something. I mean, what the fuck? Where is justice in that? For her, for her family, for her son?
But again, I say this as someone who knows there isn’t some cosmic scales in the sky. Luck is not existent. You don’t use up your good luck or your bad. Bad things can happen to people who already have more than enough to deal with. But it’s such a hard impulse to switch off, the idea that surely, surely I have had enough bad luck, that Eva, this woman’s son, have had enough bad luck. That surely we will all be in for a lucky break. It’s a beautiful delusion.
Eva’s doctor posited that perhaps a combination of factors had contributed to Eva’s death. If she had built up mucus in her nose and throat and tried to clear it, perhaps her tracchea had collapsed and when she couldn’t breath for a short moment her heart slowed down and just never picked back up again.
She told me there was nothing we could have done. I know this. Intellectually, I understand this. But it does sting to know there was an underlying health issue that I wasn’t even aware of that could have contributed to her death.
I walked out of the hospital yesterday not knowing when I’ll ever go back there. I’ve moved areas since Eva died and now if I were to get sick I would go to a different hospital. If I were to have a baby I would deliver in a different hospital. It’s a fact that is both liberating and tragic. I don’t want to leave Eva’s life behind, but I also want to move forward.