HELLP syndrome: an acute condition with enduring impact

In mid-February 2014, I went to my routine 24 week community midwife appointment. I expected to out for about an hour, and carry on about the business of being pregnant. Little did I know, I wouldn’t return home for six weeks, and that appointment would change my life forever. 

Me at 20 weeks

Me at 20 weeks

The midwife did the usual tests: my blood pressure is usually on the low side of normal, but it was so high I thought the machine must be broken. The urine dip test revealed three pluses of protein in the urine – I knew this was a sign of pre-eclampsia, but wasn’t too worried because I thought it was only a real concern in later pregnancy.

I had no idea how wrong I was.

When combined with the other symptoms I had complained of, these results got me sent straight to Bedford Hospital. I thought I was in for a lot of tedious waiting around before going home again.

Not so. My feet didn’t touch the ground.

A premature arrival

About an hour after arrival, I was diagnosed with severe pre-eclampsia and HELLP syndrome. Never having heard of the latter condition, it didn’t sink in. In any case, I was distracted by the distressing news that I was likely to have to deliver my baby that night because I was so sick. Delivering the baby is the only cure for both conditions, which can be fatal for both mother and baby.

Being only 24 + 1 at that stage – I knew I was just one day over the threshold where my baby would be resuscitated – this was devastating news. I cried and cried.

A small army of consultants, doctors and midwives were in and out of my room, which also served as an operating theatre.

Some of my beautiful bruises.

Some of my beautiful bruises.

I needed a cannula to be inserted to administer the magnesium sulphate that would help protect both me and my unborn baby from potential seizures. My deep veins usually present difficulties for all but the most experienced phlebotomist taking even a simple blood test, so a cannula was always going to be a challenge.

After about 20 attempts, with an anaesthetist taking an arm each, they mercifully gave up and inserted a central line. I could count the puncture marks in the bruises up both arms that appeared later that week. It was just as well purple is my favourite colour.

A central line is a special type of catheter that is inserted in the jugular, requiring a delicate operation under local anaesthetic. Afterwards, I had to have a chest x-ray to make sure the line was placed correctly, and not poking into a lung. A lead apron was placed over my belly to protect my baby: I remember the radiographer asking if my pregnant self was happy about having the x-ray. No, I replied, I wasn’t bloody happy about it – but it was a Hobson’s choice between irradiating my unborn baby and avoiding a potential collapsed lung.

As has been described in Hugo’s Story, I didn’t deliver my baby that night, but I did need specialist care. I was sent to St George’s Hospital a couple of days later.

Hugo on the day he was born

Hugo on the day he was born

Staff from the neonatal team at both hospitals came to visit me to present the facts about my baby’s prognosis. There was a 50/50 chance of him surviving delivery. Even if he did survive, there was a strong chance of a brain bleed, severe disabilities and a short, painful life. Being wheeled down to theatre for the section, I had accepted my son was likely to be stillborn, especially as we knew he was growth-restricted and therefore smaller than he should have been.

My partner and I agreed our much-wanted baby, who was still kicking away inside me, should be given every chance to survive.

Hugo was born alive and fought incredibly hard in the neonatal unit for 35 days.

A gradual realisation

The events of the four days leading up to Hugo’s birth happened so quickly. I had big gaps in my memory due to the heightened stress and emotional torture; extreme sleep deprivation from the hourly observations every day and night, not to mention the medication. The shock of coming round from the general anaesthetic in the intensive care ward, attached to all kinds of bleeping machines. The high blood pressure did funny things to my mind: frightening dark thoughts that I couldn’t control.

In intensive care

In intensive care

All this meant it was difficult to get my head around what had happened to me. I was catheterised, had a central line, and a stay in general intensive care. In all, I was an inpatient for 15 nights. That’s what happens to someone who is seriously ill – my foggy brain found it difficult to comprehend that I had actually been seriously ill. This caused extra distress for my partner Martin, who had been all too aware of the danger I was in.

The realisation came gradually. For example, a catheter had been inserted soon after my arrival at Bedford. I was on a very strict fluid input – 30 mils an hour. While I understood the principle of the catheter, I thought it was just yet another line for monitoring and preventive purposes: I didn’t connect it to having actual kidney problems. After Hugo was delivered, my whole body swelled to the size of a Michelin man. It was only when Hugo was a couple of weeks old and his poor little body had swollen due to problems with his kidneys that I was able to connect my own swelling with renal problems – it was quite a shock.

A memory returned to me a couple of weeks later: I has been told by a Bedford consultant that there was concern for my kidneys, but that news was given at the same time as the announcement that I was likely to have to deliver my baby that night. The fate of my much-wanted baby was at that time a greater concern than a compromised renal function, so it just didn’t sink in.

I focused all my energy on being with Hugo in the neonatal unit and probably did everything you’re not supposed to do when recovering from a C-section. For the first week, I was just over the moon that my son was alive. My foggy brain also found it hard to comprehend that my son was also very sick, meaning bad news that arrived during subsequent weeks brought me down to earth with a hell of a crash.

Guilt and blame

Hugo

Hugo

Guilt, self-blame and rage at what I saw as my body’s failure have been very strong emotions since it all started. Guilt was particularly strong as I thought I had to consent to the C-section to save my own life at the expense of my baby’s.

I now, several weeks later, understand that Hugo had to be born to give him the best-possible chance, too. During the previous night, many of my major organs were demonstrating signs of being in severe trouble, and getting rapidly worse.

My kidneys were showing signs of failure, producing just a third of the expected hourly urine output; my liver enzymes levels kept increasing; my platelets were getting so low there was a risk of bleeding in my brain, and therefore stroke; my blood pressure was so high I could have suffered an eclamptic seizure. I had to deliver quickly to save my life, avoid further, and lasting damage to those organs as well as give my baby a chance – he was so small he wouldn’t have had any resilience and would have died inside me.

This knowledge is thanks to a St George’s consultant who spent as long as I needed going through my notes, and answered all my questions.

While it doesn’t make me feel any less sad or heartbroken to have lost my baby, it is also helpful to think of it in the context of it wasn’t ‘me’ who caused the HELLP syndrome. Instead, it was caused by the placenta, which is a new organ grown only for the baby’s needs. It is the reason why delivering the baby is the only cure.

Enduring effects

HELLP is an acute (rapid onset, with a short duration) condition and the danger to life usually disappears after the baby is delivered.

Thankfully, the quick actions of everyone involved meant my organs have suffered no lasting damage.

However, other effects were longer lasting.

A cuddle with Mummy

A cuddle with Mummy

I experienced a lack of mobility for some two weeks. At first, this was due to being plugged in to lots of machines, then after the birth the C-section wounds and swelling all over my body made it difficult even to waddle short distances.

The low platelet levels at the time of Hugo’s birth meant I lost three pints of blood during the C-section, and my body struggled to recover. I was very light-headed and had to be wheeled everywhere, including to the toilet or shower.

I had a two unit transfusion of red blood cells a week after Hugo was born. My platelets then went from less than half normal levels to the opposite extreme of more than double and at one point seemed to be increasing exponentially, puzzling my doctors. Having employed the flawed logic that if low platelets meant bleeding to death,  I worried that surely too many platelets meant turning in a giant blood clot and going pop. Clearly, I didn’t: increased platelet levels are apparently a normal reaction in the circumstances, and they have now returned to normal.

Having always planned to breast feed, I expressed my breast milk for Hugo. I was frustrated to produce only 30 mils a time, especially when I compared myself to the other mothers in the unit’s expressing room, who seemed to be producing gallons. Fortunately, one of Hugo’s many kind nurses reassured me that I was lucky to be producing any at all because I had been very sick, and encouraged me to persist.

A rare condition

Giving Hugo a comfort hold.

Giving Hugo a comfort hold.

Thankfully, HELLP is very rare. There are only a handful of cases a year, and to have it at such an early stage in pregnancy is even more rare. A couple of weeks after Hugo was born, I got a taster of how unusual my case was.

I had returned to the St George’s delivery suite because I was worried about my C-section wound. The exchange with the midwife who greeted me went something like:

Me: I had a C-section three weeks ago. I’m worried about my wound, could I see someone please?

Midwife: Can I have your notes?

Me: Erm no, sorry, I didn’t even think about bringing them.

Midwife: (grumble, grumble) What’s your name?

Me: Leigh Kendall

Midwife: Oh, you’re the lady who had HELLP! Come with me.

Cue a round of observations and being seen by a doctor in record time.

Information and support

HELLP is so rare, it is difficult to find much information about it. To compound that, it is also poorly understood.

I am probably now one of the world’s leading experts about HELLP, having read everything that I’ve been able to get my hands on – but ‘everything’ isn’t actually very much.

Hugo, Martin and me

Hugo, Martin and me

Fortunately, I have a strong, healthy body that was able to return to normal again soon after I delivered Hugo, with no lasting damage.

While I am physically ok, the psychological effects take a lot longer to heal. Having experienced a life-threatening illness can be difficult to come to terms with.

There is a paradox: I feel what happened to me is terrifying. However, gaps in my memory mean I have a difficult time relating it as something that happened to me.

I have a paranoia about my health, especially because what I had thought were routine pregnancy symptoms were actually indications that I was seriously ill.

This has been made worse by knowing that I needed to have tests to find out whether an underlying condition could have contributed to HELLP. I did research to find out what the tests were likely to be for, and managed to frighten myself silly. I am awaiting the results. Hopefully they will be negative, but if they are not, I now know the conditions can be dealt with. This knowledge makes me a bit less frightened than I was. (Update 8/5/14: the blood results have come back clear. My sensible brain knows this is good news, but my irrational brain is frustrated by the lack of an answer, and a cause-and-effect aspect to blame.)

There is also a lack of knowledge about HELLP amongst health professionals.

I visited my GP after Hugo’s death worried I still had HELLP symptoms. They reassured me that I was ok, because my urine was free of protein and “the ‘p’ in HELLP stands for protein”. You, dear readers, will now know as well as I that the second ‘l’ and the ‘p’ stands for low platelets. No disrespect to my GP – he is very good, and always listens – but it highlights the problem of getting the necessary support.

Absolutely no support exists for women who have lost a baby, and who have also suffered serious illness themselves. Absolutely no support exists for women who have suffered from HELLP, irrespective of the outcome for their baby. Even women who are able to take their baby home can suffer trauma several years after the event.

Future pregnancies

Women who have had pre-eclampsia and HELLP once are at risk of getting it again in a subsequent pregnancy. The good news is evidence suggests the condition is likely to appear later, and in a milder form.

However, no one can know whether ‘later’ means weeks, or days – not terribly reassuring when it previously struck me at just 24 weeks.

There are things that can be done to minimise the risk – unfortunately, it’s impossible to completely prevent it – such as taking daily aspirin and blood-thinning injections.

I would be monitored within an inch of my life by a community midwife and by a hospital obstetric team. It has been recommended that my care in a future pregnancy be handled by a tertiary specialist hospital, as I would now be too high risk for any district general.

While it would be reassuring to receive such regular attention, any subsequent pregnancy would likely to be fraught with ridiculous levels of anxiety and stress, which would not be beneficial to me or the baby.

A cuddle

A cuddle

Even if I got past 24 weeks, I would be anxious about the baby being growth-restricted again, or losing a baby to placental abruption – not to mention the wide range of other problems that can occur. I am terrified of having to relive this pain and grief.

Access to an iPad, internet and too much time on your hands is a dangerous cocktail and it is difficult to unlearn everything I have read.

I am also aware it is still early days, and the pain of losing Hugo is still very raw. I will always be Hugo’s mummy and he will always be my first child. I hope he is not also my only child.

At the age of nearly 37, I am aware if I would like to try for another baby, I can’t wait too long as I would add being old, in maternity terms, to my ‘high risk’ status.

HELLP is a devastating condition. While it is reassuring to know everything possible was done for me, and to give Hugo a fighting chance at survival, the road to a full recovery is long.

 

2 thoughts on “HELLP syndrome: an acute condition with enduring impact

  1. Shelley Davey says:

    All the stuff you said about having another. I can not put my family though that again. I have flash backs of what happened nearly every night and it scares me so much. I may have never got hellp if I had my daughter earlier but I don’t think they knew what to do with me. By the time I had my daughter I had no liver of kidney function and protein in my we was 1564mg when 23mg is not right. I really think more needs to be out there while in hospital I got told I had severe pre e and what can happen they told me that it could turn to hellp but they wouldn’t let it get to that also was told none of the signs everyday I had the pain in my chest but I had had it for so long it was just part of me now and my gums were bleeding so bad every time i spoke I wud have to spit blood out. If I was told what to look out for I may have said something. My blood pressure was always 140/90 never less. I am so happy to have found this page and sorry if I have gone on its just nice to talk to someone who has had it too.

    Like

    • Leigh Kendall says:

      I’m sorry you had HELLP too. I understand how good it is to be able to talk to someone who gets it, and about the flashbacks too. There really does need to be greater awareness. Thanks for visiting xxx

      Like

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