So the mastitis was being treated and my boobs were starting to feel less like glass expressing machines. I had accepted the loss of milk production but I was still expressing and giving my milk to the nurses for freezing. As usual, I called the ward around 4am and spoke to mums friend who was on shift. She reported that all was well with Betty and that she’d had a good night. I showered and had coffee, my usual routine.
At about 06:30 my phone rang, private number. My heart flipped and sank a thousand times. I answered and it was mums friend. She told me that Betty had taken a turn for the worse, that they had called the doctors over and they thought her Chylothorax had returned. I was told her breathing was strained, she was working hard, crying a LOT which she had never done before. They had ordered a chest X-ray and advised we get to her as soon as we could.
I woke James up and we shot across as quickly as we could, James was so calm which annoyed me at the time, but he had 100% faith in the medical team at the unit so he just assumed she would be fine.
When we got there, Betty was screaming. I got her out of her cot and tried to comfort her but it didn’t work. She didn’t know who I was so it had no impact at all (this thought remains and it taunts me, that I wasn’t really her mum for so long). She was red in the face and was pulling her legs up. I thought it looked like colic but daren’t say so as I thought I would be seen as just naïve and stupid. We watched as the various medics came and took blood, poked and prodded our screaming little girl, watched the X-ray team come, place her on a cold slab and do their job (when they X-ray little babies in NICU they’re placed on a flat surface, naked and left while the machine does its job, it is heart wrenching to watch).
As Betty had recently started having 25% of my breast milk mixed with the Monogen, it was assumed by all, including me that this bad turn was the Chylothorax and that Betty would have to stop having my milk again and potentially face major surgery.
The day doctors arrived and a friendly female consultant approached us. She had a kind face and she spoke to me and James whilst examining Betty and asked us questions. She asked if I was feeling ok, to which I replied ‘yes, I am fine’ because all things considered, until that morning, I was fine! But I had forgotten about the searing breast pain of the past week and James was quick to point out that I had mastitis and was taking Fluclox. The Dr opened Betty’s nappy and queried its contents. She asked us what milk Betty was having and I assumed it was the stock frozen milk that was defrosted daily as this had been the case so far. However, one of the nurses overheard this conversation and said ‘no, we’ve been using her fresh milk…..’. And bingo! Betty had colic like symptoms, tummy ache and diarrhoea! I was right! The Dr was furious that Betty had been given my fresh milk for the past 48 hours which contained Flucloxacillin which can give little babies an upset tummy. Phew!
As a result of this commotion, the chest X-ray was available almost immediately and the Dr went through it with me, explaining exactly what the image showed. Thankfully the image confirmed the Dr’s findings, no fluid accumulated in the chest cavity. They went into a fair bit of detail too, which was really great because I actually understood what was being said and what they were looking for.
The day this all happened was a Sunday. The following day James and I were asked to meet with our lead consultant, Dr F and the family support nurse. Again, this filled me with dread. The thoughts that ran through my head while walking to the room to speak to them included: are they going to tell us our baby is going to die now? Are they going to tell us our baby is going to die soon? Are they moving our baby to the general hospital? Is our baby ok? Why do you want to see us privately?!
Actually the meeting was about none of the above. It was a simple case of, we were Portsmouth patients, or rather Betty was, and we were taking up a Southampton bed which we no longer required. We were not comfortable with leaving Southampton in the thick of Betty’s trial on my breast milk. But I was too intimidated and scared to speak up. So James did. He was polite of course, but he explained the situation back to Dr F in terms that were clear to him, and it was a pretty decent analogy to be honest. James proposed that had he replaced the engine of a customer’s car (James is a mechanical engineer by trade and runs his own car repair workshop and car sales business) he would ensure the care was safe to drive, by keeping it for a period of time, test driving it etc. This seemed to click something into place for Dr F and she succumbed to allow Betty to remain in their care in Southampton until the trial on breast milk was complete. Now, as I work for the NHS and grew up with my mum working on the NICU, I know too well the pressure on beds. So for Dr F to return to her superiors/bed manager and explain that Betty was staying put, would have been a difficult conversation. Bet she did it. And she did it because she is a truly compassionate and genuine person as well as an excellent doctor. We were so grateful that she allowed us to stay and we will never forget her kindness.
Sometimes we get so caught up in our procedures at work that we can overlook what is staring us in the face. The people we treat are people. They all have loved ones, regardless of what they may have done or how they behave. The babies in NICU have parents that are most likely, scared shitless! The patients I treat are probably scared too, and they can show this in ways that seem aggressive or hostile. But one thing I have learned through our time in NICU is that what you see is probably not the full picture. The people that look scary, tattoos on their faces maybe, they are human and they feel. The person that seems completely calm and almost as though they don’t really appreciate how sick their child is, they are human, they are coping. They are coping in the only way they know how and it may seem odd or different to us, but we are all different and we all cope differently. I have learned to stop and think before I judge. I have learned that you really have no idea what other people are dealing with so it’s best not to be a dick! I remember one couple that I saw on our journey, I was weary of them, I had a feeling that our paths may have crossed before and I was terrified they might harm Betty. Looking back I can see that this was probably irrational. I told James that I was concerned about these people so James made an effort to speak to them. He reported back that they were fine, normal, just parents coping in their own way. At the time I was not convinced but I think he may have been right. These people lost their baby on the unit and when I heard, I cried. I cried for them, for their deep and irreparable loss, for their confusion, the fact they would have to leave this strange new community that we’d all become part of. I think of that couple from time to time and when I do I feel guilty for making a judgement that was so far from the truth.
So Betty was making great progress and it was only a matter of time before the pressure on beds was brought to our attention again.