Headspace Perspective Guest Post

This is a beautiful guest post written by Leigh Kendall who blogs at Headspace Perspective. Here she talks about the staff who looked after her little boy Hugo after he was born at just 24 weeks.

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My son Hugo was born when I was just 24 weeks pregnant because I was seriously ill with pre-eclampsia and HELLP syndrome. These are rare, life-threatening illnesses that occur only in pregnancy. The only cure is for the baby to be born, irrespective of the gestation.

The night before Hugo was born (by emergency Caesarean section, while I was under a general anaesthetic) a neonatal consultant came to visit my partner and I in my maternity high dependency room. He warned us that because Hugo was so small (he was growth restricted as well as premature), he was likely to have all sorts of problems including a brain bleed and bowel issues – if he was born alive.

Happily, Hugo was born alive. We were both cared for in a specialist hospital that was about two hours’ drive from home. I had been transferred from my local district general the day before Hugo was born because I was so ill and my baby so premature.

It was 30 hours before I was able to meet Hugo: I was in adult intensive care and too ill to be taken to him, while he was in neonatal intensive care and too ill to be taken to me. Our first meeting was very dramatic: my partner, Martin (who had spent the past day and a half rushing between my and our son’s bedsides) was sent to get me because Hugo’s blood pressure was declining rapidly, and nothing the team could do was working. They were worried they were losing him. I was petrified and could not get to the unit – at the other end of the hospital, and in a wheelchair – quickly enough. When I arrived, Hugo stabilised immediately, the little monkey.

The consultant encouraged me to touch Hugo. I was reluctant because he was so small, only 420 grams, but I reached in the incubator porthole and he instantly grabbed my finger. It was the best moment ever, and one I shall never forget.

The team caring for Hugo was incredible. Being in neonatal intensive care, he had a dedicated nurse to look after him at all times. I was an inpatient for 10 days after Hugo was born, and poor Martin was run ragged going between the NNU and the postnatal ward. The nurses caring for Hugo made sure Martin was cared for, too: they knew we were a long way from home (we were fortunate to have a room in a Ronald McDonald House on site, which meant we didn’t have to worry about travelling home).

Having a baby in an incubator is strange, because it can make you feel like you are not being a ‘proper’ mummy. The majority of Hugo’s nurses encouraged me to do everything possible to get hands-on with him, with changing his nappy, expressing my breast milk, helping with the feeds including the aspirate test, taking his temperature and other simple cares. Changing a nappy through the portholes and with the tangle of wires is a challenge, but with the nurses’ guidance I was able to improve my skills. At first, I was reluctant to lift Hugo’s legs to get to his bum because they felt so fragile, but again with their support I gained the confidence to do the full job. Those moments were invaluable, as they helped me feel I was doing as much as I could for my son.

The nurses encouraged us to ask any questions we wanted, and that there was no such thing as a ‘stupid’ question. There is so much machinery, so many monitors, wires, infusions, drugs, terminology – it is a lot to learn. My brain was so addled, I asked the same questions repeatedly trying to make sense of it all.

Hugo’s nurses were clearly very fond of him. He was quickly nicknamed ‘Hugo Boss’ not only because of his early days nesting on a cloth of silk to protect his tender skin, but also because he was feisty and knew what he wanted and when he wanted it.

When Hugo was able to have cuddles, at about four weeks old, the nurses did everything they could to facilitate it. We had skin-to-skin cuddles: the nurses could see how beneficial the cuddles were for both Hugo and me.

There were a couple of nurses with whom we didn’t have such a good relationship. One of the nurses seemed to be intimidated of Hugo. It may sound strange to hear that a grown woman could be intimidated of a baby who weighed no more than a tin of baked beans, but when Hugo had a ‘moment’, everyone knew about it. She responded by not allowing me to comfort hold Hugo, or help with cares. She made us keep the incubator cover on; all we were able to do was look at the monitors which was pointless, so we left. We later discovered that was unnecessary, but we were very cross.

The other nurse was a poor communicator, and made me feel like I was in the way. She sighed when I asked for a cuddle with Hugo, and wouldn’t let me help with cares. I was so upset, and in tears by the end of her shift.

Both of these nurses wanted to do their jobs well, and to do what is best for Hugo. I fully support that, but neonatal nurses need to remember that they need to involve the parents, too. The welfare of mum and baby is intrinsically linked.

Thankfully, Hugo didn’t have any specific issues besides being very premature – we hoped all he needed to do was to grow bigger and stronger.

The doctors and consultants were also fantastic. They mostly explained things clearly, and were always honest with us – even if those honest words were ones we did not want to hear.

After rounds, the consultant would ask if we had any questions, which was great. We often ummed in response, because we had so many questions we just didn’t know where to start. I would suggest that the medical team give the parents a few moments to let things sink in (whether it is good or bad news) and either pop back if possible, or make sure the parents know that they can come and find them later. Most parents will want to be involved as much as possible in their baby’s care, and they can only do that if they are helped to understand, and have all the knowledge they need.

When Hugo was born, Martin and I were given a stash of beautifully-produced booklets and leaflets about premature babies. They are incredibly detailed – too detailed to take in when you are stressed and knackered, and neither of us read them. That meant we didn’t know things that I think the medical team assumed we knew – such as that the ventilator, while it was keeping Hugo alive, was also damaging his lungs. Being told when Hugo was three weeks old that he had chronic lung disease was a terrible shock.

The next two weeks were horrendous. Hugo was up and down all the time, frequently desaturating. In the fourth week, we were sat down by a consultant who said that babies like Hugo are unlikely to make it. We were devastated. The next day, however, a course of steroids were started. We knew this was Hugo’s last chance and were so excited when they seemed to be doing the trick. The improvement was short-lived, however.

There were a few communication mix-ups during that last week: one consultant said that if Hugo had not reached a certain ventilator pressure number by a certain day, ‘there was no point’. We took this to mean that they would just pull the plug, so to speak, which of course wasn’t the case at all. We sat down with the consultant and talked about the options and while it was not a pleasant discussion, we felt more aware of what was happening. It is crucial for doctors to be aware of what they say and how they say it in order to avoid unnecessary upset.

When Hugo was 35 days old, we were told there was no more hope from him. The way the news was delivered was far from ideal, and insensitive: I have written more about it in this post. It is of course news no parent wants to hear, but there would have been much better ways.

Hugo died peacefully in my arms later that day.

I am utterly heartbroken, devastated, bereft.

Putting aside a couple of incidences that could have been better, one comfort is that everything possible was done for Hugo. He received the best-possible treatment and care by a nursing and medical team who are completely dedicated to their work, and to the babies. I cannot thank them enough.

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