Recovering from HELLP Syndrome: My Postnatal Inpatient Experience

I had finally met my son Hugo, born 16 weeks early because I had HELLP syndrome.

A bed in the maternity high dependency unit had been finally found. I reluctantly left my precious little Hugo to be taken to my new bed. Thankfully, the ward is adjacent to the NNU.

There was a small welcoming committee waiting for me, including an obstetric consultant and midwife. We discussed my stay in intensive care, and the unacceptable delays in bringing me to see Hugo. The discussion was heated, emotions heightened, tempers frayed from the events of the past few hours, piled on to the trauma of the week.

I was informed of the official complaints process. Caring for a critically ill baby and recovering from major surgery myself meant following official complaints processes was unappealing, to say the least. I did not have the time or emotional energy to expend on writing letters. It was agreed the intensive care matron would visit me after the weekend, which she did. Sadly an official complaint letter still needed to be written because they just did not understand how I felt, and eventually I had a meeting with senior staff on that ward to help them understand. Unacceptable, and a topic for another blog.

The midwife caring for me was wonderful. Kind, calm and reassuring. She and Martin hand-expressed my colostrum for Hugo. A couple of times they had competitions to see who could express the most (the midwife won, the benefit of years of experience). I was unable to help – my hands had swollen so much I had lost the ability to grip anything.

Most of the night was spent staring at the clock on the wall opposite my bed, watching the hands go around. When she came in to do my observations the midwife told me to try and get some sleep. I must have had some catnaps at some point, but my brain was unable to rest. My head was racing with the intense love I felt for my new baby son, amazement and relief that he was alive, sadness that we were separated, anger at being kept from seeing him for all those hours, and bewilderment at everything that had happened that week. Far too much to take in.

The next morning, an anaesthetist arrives to remove my central line. I no longer need a cocktail of drugs to be administered through it. I had become quite fond of my central line; with the range of coloured tubes dangling from it, it was almost like a fashion accessory. I was left with a couple of tiny scars on my neck from the stitches that had held it in place. They healed quickly, and in the meantime I looked as if I had been nibbled by a vampire.

Me with my central line.

Next was the removal of my catheter. I had to record my fluid intake, and pee in to a bedpan so the midwife could monitor the output. Eventually, I was able to record it myself. Luckily the room was ensuite, meaning I didn’t have far to waddle to the loo. The sensation of a full bladder – and recognising it as such amongst the pain and discomfort of my C-section wound – especially after having a catheter for six days took a bit of getting used to. Over the coming days, I learned to empty my bladder regularly rather than wait for the full feeling, which could hurt.

Mercifully, I was able to have my first proper shower in nearly a week. I had as much of a shower as I could four days earlier (without getting anything too wet!), and a bed wash on my first day in intensive care. While it was the least of my worries, I was aware I smelled. Being able to wash my body and my hair felt wonderful. I couldn’t move very much, so Martin handed me all bottles I needed. I was scared of doing something to my wound, but just patted it dry.

Even better – after my shower, I was finally able to wear my own pyjamas. A glamorous standard-issue bottom-baring gown had been my attire since I was admitted. Feeling clean, and in my own clothes I was starting to feel like me again. The only problem was my body was still so swollen none of my knickers fit. My friend bought some emergency granny knickers for me – I am never, ever revealing their size!

I was able to visit Hugo, and under calmer circumstances. He was doing as well as could be expected, though I knew nothing at that stage was certain. I savoured every single moment with him, trying to take him all in, and taking photos and videos.

It was during that weekend we had ‘the chat’ with the consultant on duty. He told us that due to his size and prematurity, Hugo was still very sick. We could expect to be in hospital with him for at least 16 weeks – the time he was supposed to have arrived. We were told about some of the things – complications and the like – we could expect to happen. Considering before Hugo was born we had been told to prepare for the worst, I chose to believe the consultant was again giving us the worst-case scenario. Hugo was strong, and feisty, and we had to keep him free from infection until he grew bigger and was able to come home in the summer.

The following day, I was assessed as being well enough to go to the regular post-natal ward. I was relieved to have my own room, although I could still hear babies, and see proud parents going home with their new bundles. I tried to think ahead to taking Hugo home.

The first photo I took of Hugo.

Martin, who had been sleeping on a mattress on the floor of my high dependency room, was equally relieved to now be able to sleep in a proper bed. We were fortunate to have a room in the Ronald McDonald House on site for as long we needed it.

The greatest nuisance about the post-natal ward is that it was several floors and a couple of corridors away from the NNU. I was still unable to walk, meaning Martin had to wheel me there and back. The lifts were infernally slow, too.

There were a couple of occasions where I would be all ready to visit Hugo, and a midwife would ask me to wait as the doctor needed to see me, and they would be with me ‘in a minute’. That is a turn of phrase of course, but the doctor took quite a while to arrive. Martin would wait with me, and the delay meant we were unable to see Hugo because the NNU’s round had started. Missing precious time with a critically-ill baby because of simple communication issues is unforgivable. Eventually, I would go to see Hugo anyway – sometimes I was called back, while other times I missed meds. The needs of neonatal mums on post-natal wards need to be better considered.

My visits to Hugo were supposed to be brief, because I was still recovering. I wanted to spend all the time with Hugo that I could – my own health was secondary to me. One evening my body took control, making me faint, shake, and a racing heart. Poor Martin got another fright. An ECG revealed there wasn’t a problem – I just needed to rest more.

Family and friends sent congratulations messages and lovely presents for Hugo. I was so grateful for all that kindness – not only did it help us feel not alone so far from home, it also helped me revel in the excitement of being a proud new mum, which was especially important in amongst the strangeness and the trauma.

Me on the postnatal ward, still horribly swollen.

Doctors from all sorts of specialties came to see me on the postnatal ward. A special case, I suppose. I don’t remember much of what I was told, and I remember asking the same questions repeatedly. I was able to retain little information. A kind anaesthetist arranged for a physiotherapist to visit me to look at my hands: even when the swelling had subsided, I was unable to grip. I couldn’t hold a pen, cutlery or toothbrush properly, meaning I had to rely on others to help me – I hated being so helpless. It was assumed the swelling had affected my tendons, and I was given some exercises to help the normal function to return, which it did after a couple of weeks.

I was on lots of medication – tablets for my blood pressure, iron tablets, painkillers, and ranitidine. The latter is for heartburn. I remember the midwives asking if I still needed the ranitidine, and being adamant that I did – I reasoned it was keeping that awful pain away. I did not realise that the awful pain had gone because Hugo had been born, and the worst of the illness had gone.

Daily blood thinning injections were also given. I learned to do it myself, because I would need them for several weeks after discharge. The midwives were good tutors, and as long as I got the angle right and didn’t dither, the injection wasn’t that bad.

Hugo was sent some lovely presents.

Expressing my breast milk for Hugo meant that I was very conscious of all the medicines I was taking, even though they were all approved as being fine. For several days the midwives had been encouraging me to try Tramadol, not only because it would help with the pain, but it would also help me relax. I gave it a go – and found out what I had been missing. Tramadol is AWESOME! I remember giggling over nothing after my first dose, and blissfully sleeping for hours. It was much-needed.

My first photo with Hugo – taken on March 3.

By the Tuesday, I was assessed as being fit for discharge. Martin didn’t agree, as I was still weak. I was unable to hold a conversation, and the room would frequently spin, like it does when you have had one too many glass of wine.

I completed my friends and family test, and while I was waiting for my meds went to take a shower. The shower and loos are down the corridor. I built up my mobility and helped reduce my swelling by walking (waddling) there and back. My body again told me I was doing too much by making the world all blurry, my legs weak. I used my last ounce of energy to stand against the wall while awaiting rescue. After that episode, my hospital stay was extended, and I had to be wheeled to the loo and shower. Annoying.

The midwives would check I was already awake and expressing my breast milk to do my nightly obs, to save waking me up again. That helped me get a bit more rest.

It was agreed I needed a blood transfusion, as my symptoms indicated my body was not naturally replenishing the blood I had lost when Hugo was born. That would mean another cannula, which after the palaver of the previous week I was not looking forward to. Mercifully, an anaesthetist inserted one in my left hand, first time. I was given two units of blood, and started to feel so much better soon after. Colour returned to my cheeks, and I had more energy.

There was a little bit of panic when my platelets went from being dangerously low to very high. My logic was that if low platelets meant I was at risk of bleeding to death, surely a high level of platelets meant clots. I was paranoid, convinced every twitch in my leg meant a thrombosis. Being more mobile and my muscles getting used to functioning again caused the twitches, but considering the extraordinary and unexpected had already happened, I worried about what could be next.

After so long in hospital, I was desperate to be discharged. I wanted to be free to see Hugo whenever I was able. I wanted to go outside, to see the area we would be staying in. All I had seen of the hospital and locality was what I could see out of the window – it was quite disorientating.

I was also desperate for a decent meal. The hospital food is revolting, and I gave up on the evening meals because they would be left on a tray while I was on the unit with Hugo. I craved tasty, healthy food for my own recovery and so good nutrients could be passed to Hugo through my breast milk. Thank goodness for the M&S in the hospital reception for endless supplies of their salad bowls, and fruit yogurt.

Hugo holding my finger.

And so, after two weeks in hospital I was finally discharged – a year ago today. There was a bit of unhelpful confusion about where I would get my postnatal checks (the options included seeing my own GP two hours away, or going through the palaver of registering with a local GP – either option was unrealistic).

Once that was resolved (I would see the community midwife at the hospital) and my huge bag of meds was prepared I was ready for Ronald McDonald House, and the next stage of our journey with Hugo.