How did it feel to be the parent of a baby with trisomy 18 on the neonatal unit?

I've been searching for an analogy for this for a while, you know the type: imagine you're abseiling off a tower and half of the instructors think it would be in your best interests to fall to your death, but you don't know which half; or, you have to negotiate an obstacle course in order to save your child's life, and along the way you'll meet people, some of whom will tell you the truth, some of whom will lie, and some will prevaricate, and you have to work out who is on your side in order to win.

However, I've decided there is no analogy that really fits this experience, so I've decided to tell it how it was. This of course is how it was for us. Not how it is for people in wonderfully supportive neonatal units who not only agree to treat your baby, but actually want  to; and probably not how it is for people with a postnatal diagnosis. Hopefully those people will chime in with their experiences.

Why now? Why tell it now? Partly because I have friends about to go through this experience, and like us, I doubt whether they know what they're getting into, although I imagine their experience will be unique. And partly because I want the medical team, one of whom recently admitted to us that there had been an irretrievable breakdown in relationships, to understand how it felt to be us. (If they would like to communicate how it felt to be them, they should feel free to get in touch.)

So we entered the neonatal unit with a history which was bound to make things difficult:

• We knew that the unit did not routinely actively treat babies with prenatally-diagnosed trisomy 18 - in fact, had told us that they had never done so before.
• We'd had a long fight to obtain treatment which involved a great deal of scheming, manipulating and planning on all sides, and was not at all the 'following through a process' that you'd imagine.
• We knew that, while they had agreed to actively treat Rumer, they had done so under duress, and by no means all of the neonatal consultants actually agreed with the plan to do so.
• Our strong impression was that the junior doctors did not know about the plan at all, and that the situation and history had not been communicated to them.
• We also came from a very quick birth, marred by a difficult relationship with the neonatal consultant attending, with whom we had a history.

In addition, we came from a pregnancy in which we'd been able to take control (as the management was  facilitated by an excellent obstetrician who was truly willing to work with parents) and with experience of being able to make informed choices at all stages, using various methods: open access to the medical notes, planning before appointments, and discussion. This was our first experience of being in the hospital 24/7, and of course, of being new parents to a sick baby.

So what was our experience? First of all, there was a great deal of cognitive dissonance. Our experience was that we'd fought hard; this was a unique situation; we expected a very short life for our baby; this was something that was not done. And from the minute we walked through the neonatal unit doors, there was an attitude of 'this happens every day', and 'go and get some sleep'. I am sure we presented to them as clingy, anxious parents from the start, as we didn't leave and go and get some sleep but instead stayed nearby, touching Rumer and being with her. Not knowing how long we had. We'd imagined a day, maybe two: why would we go and sleep?! But the nurses, who had little idea of the diagnosis and it's meaning (or so it seemed to us), seemed to think we were being ridiculous.

Secondly, we found the neonatal unit unique in its rules and routines. Having toured the unit during pregnancy, we'd anticipated the requirement to leave twice a day for nursing handovers, and even the requirement for leaving on ward rounds - though at times this was handled badly and caused Rumer some unnecessary suffering. I think it had been anticipated that we'd object to this compulsory banishment, but actually we found it useful for eating and taking a brief break.

However, while we'd anticipated these things, we hadn't anticipated the restrictions on reading Rumer's notes or the fact that staff considered that we should not be involved with decision-making about our baby's care. 'Parental involvement' seemed to consist of changing nappies. I am sorry, but for us, this was not involvement enough, or anything like it. We knew that the whole of Rumer's life may be spent here; this could be most of the time that we had with her. We wanted more than changing nappies. Beside that, we also had been accustomed to being part of the decision-making team - in fact, the deciding vote on the decision-making team.

This is not the culture on the neonatal unit at all. Parents are 'encouraged' to ask questions, but are expected to accept the answers given. The idea that parents might accept or decline treatment options, might want to discuss a variety of management approaches to an issue, or might have their own opinions (evidence-based or otherwise) on their child's care, was not considered. Chris at one point described the neonatal unit as being like a garage: you dropped your baby off, they gave you occasional progress reports, and you picked her up when she was fixed. This was an analogy that still rings true. Additionally, we found that the 'doctor as God' hierarchy still existed strongly in the neonatal unit. Interestingly, the other place it existed strongly was PICU, so I wonder if it is a feature of intensivists.

I think the biggest thing we found was that nobody could really understand our lack of trust. They didn't understand why we questioned them so much, why we didn't just trust "the gas was okay" but wanted to know what each element actually was and why it was out of range. We found out subsequently that some nurses didn't want to care for Rumer because we asked too many questions. Without knowing the history, they really didn't get why we wanted to read the notes, why we interrogated them on everything. In their view, we were controlling and 'difficult', possibly even 'aggressive'. In fact, we were anxious and mistrustful, and knew that some senior doctors on that unit considered it in our and our daughter's best interests for her to die. They would consider that failing to treat appropriately was, in fact, acting in her best interests.

We couldn't be neonatologists, but we could look things up, ask questions and assess their ability to answer them to determine their reliability. We did find people we could trust in the neonatal unit. There was an excellent neonatal nurse practitioner who could answer questions; we therefore did come to trust her answers. There were many people who may well have known the answers but didn't give them, either because they thought we didn't deserve them or because we made them nervous of giving them, but we didn't build much trust in them.

Trust was a significantly lacking feature between us and the staff, and it did make being in the neonatal unit a very anxious time for us, and the more anxious we got, the more controlling we became; the more questions we asked. The staff reaction to lack of trust, interestingly enough, was to become less  trustworthy: to become more avoidant, to fob off more, to refuse to answer questions. For us, this was a never-ending cycle. We only broke it by leaving, hopefully never to return.

I think that what we really  found hard on the neonatal unit, in the end, was the gossip culture. This, combined with the non-communication with parents (which I think in our case was reinforced by our own reputation of asking too many questions) was what, in our case, led to the most significant and irretrievable breakdown of communication and trust.

We call this 'the saga of the notes'. At some point I'll go into this in detail, but here's a very basic version.

We were given permission to read the notes by one neonatal consultant (against unit guidelines), so we carried on reading them. One day, a nurse objected, and as we only later found out, went to another consultant, who said no, we couldn't read the notes. Sadly this was never communicated to us, by her or anyone else. So when we asked as usual to read the notes, our 'error' was to happen to ask the other nurse in the room, while our nurse was out of the room. At the time, we had no idea it was an issue, but it soon became common gossip that we were doing this in order to sidestep the new rule, in order to act sneakily. Especially when we did it again (still with no idea that the rules had changed).

Gossip escalated, as clearly was the culture, and the notes were hidden from us. Nurses were colder to us. We were at a loss to understand these changes. This escalated to a series of meetings involving mediation, and was eventually resolved in our favour shortly before we left the unit: we were allowed to read the notes as long as no other parents were in the room. By that point, any possibility of positive relationships were long gone. I still think it is ridiculous how relationships were destroyed over something so insignificant. Gossip culture and poor communication were the primary contributors to this.

So how does it feel to be a parent of a baby with trisomy 18 on the neonatal unit? For us it was constantly anxiety-provoking, it was stressful, it was demanding, and we never could trust them. I have no desire to go back. I am pretty certain they have no desire to have us back.