Daryl - Ann


She then spent 3 weeks in NICU battling with a pneumothorax, seizures and edema all over. The edema meant that her brain was swollen. This meant that her brain was telling her body not to urinate, which in turn meant that her body, and brain, swelled more. Her head was 34cm at birth, and just over a week later it was 36cm. She was put on half rations to dehydrate/starve her, so that she would start to wee, and it worked.
Before she was 24 hours old, she had required resuscitation again, and had started to have seizures, so was given a couple of anti-epileptic drugs which knocked her out for the next two weeks. We were desperate to have her awake, but sleep was better than the awful ‘sunset eyes’ seizures she was having.
Various scans showed she had hypoxic ischemic encephalopathy, and we were told she was unlikely to walk, talk, eat or even breastfeed. Infact, we would be lucky if she made it to her first birthday, as she would likely be killed by infection before then.
I’ve since told a hall of med students that this must be the most important skill for a doctor to attain; to be able to make the hopeful next of kin hit rock bottom. It sounds bad perhaps, but we needed to get there. We needed to realise that everything we had been looking forward to for the last nine months could disappear very soon. We needed to cry and get angry and sad. We had two things that helped us to get through this. Firstly, Rob and I have always talked about EVERYTHING.
Until 3 in the morning we’d stay up debating this or that, and this was no different. We told each other everything. All our sad thoughts, all our dark thoughts, all our hopeful and angry thoughts. We didn’t hide anything from each other, and we’ve kept it like that. This was no time to keep secrets, our load was heavy enough without them.
Secondly, my mother had come down to help out with the birth and the first week or so at home. I don’t know what we would have done without her there. She gave us someone else to talk to, someone to distract us, and someone from whom we could draw strength. She never really cried that whole time, except for by herself in bed at night, I found out later. We will always be so grateful for her strength.
I hope though, that the doctors who have to give that speech, secretly hope they’re wrong. And how hard it must be for them, as they would never be able to take credit for any improvements, but maintain that bottom line, that pessimistic view, so as not to let your hope get away on you.
What made the whole thing so much harder was that the mothers whose babies were up in NICU (on the 5th floor) where put in the room right at the end of the corridor of the Maternity Ward (on the 2nd floor)…so everytime we went up to or came back from NICU, or went to get the breast pump or anywhere else, we had to walk past all the rooms with mothers with their babies beside them. I should have had my baby beside me too. It was the most upsetting thing I’ve had to do. I was so angry and jealous of all those other happy families, who weren’t going through what we were. It just wasn’t fair.