HELLP syndrome story

Hellp Syndrome is a complication of pre-eclampsia. My son was born at 27 weeks’ gestation. This is my personal HELLP syndrome story about premature birth caused by Hellp Syndrome.

It’s odd people say things like this.  New mothers don’t want to tempt fate. They keep quiet – “mum” even – during the early weeks not wanting to announce anything until after that first scan incase the pregnancy doesn’t continue. Yet later on, when the Mamas and Papas order has been unpacked and you’re faced with weeks of thumb twiddling in front of This Morning (admittedly less likely if it’s your second), impatience for the baby to pull its socks up and come out, like now, is understandable.

But for anyone whose baby was early, these innocent enough asides wishing for a hurried end to pregnancy, usually from mums who have safely reached eight months plus, provoke a shiver inside.

“You forget how small they were.” says someone seeing a newborn for the first time. But some of us don’t.  Not when they weigh the same as a bag of sugar.  I make cakes bigger than that.

Pregnancy was a stressful time. My husband was off work for two months after surgery whilst I did all the bending and carrying.  Although not sick I had found coping difficult.  I counted down until 32 weeks relishing two months at home.

At 27 weeks I had a normal antenatal check.  We drove to Cornwall for a holiday; six hours in the car and I’d swelled up like a balloon.  But then pregnant women have a habit of doing that. I waddled round in flip flops and was glad when we came back.  We had another week at home to get jobs done, like that decorating that nursery that was still an office.  My husband could lift stuff at last. We ordered paint. The dust sheets were still all over the floor the morning I went to the hospital.

We’d been to Bluewater to buy a computer, expecting to have 2 months to learn how to use it. We had a demo of a Bugaboo in John Lewis.  There was a six week wait for delivery but we didn’t place an order because we had so much time.  We got home and ate late.  By 1am I was wriggling around in agony, presumed indigestion.  Tablets did nothing and it went on all night.  That day I’d read an NCT magazine article about symptoms to never ignore.  Pain in the upper right side was one of them and I had it.

Friday morning, 7am. By noon the pain had gone away and a doctor told me to go home and “just take Gaviscon”.  What about my blood test results? I asked. She’d not seen them. Two minutes later she announced I was going to be given a steroid injection straight away incase they had to deliver the baby. Good job I asked about those results; it saved my son’s life and possibly mine too.  They’d shown that I had HELLP syndrome, a variant of pre-eclampsia affecting 1 in 1000 women.

HELLP syndrome means your liver goes toxic and you can bleed to death and have seizures.  The placenta is disintegrating and the only treatment is to deliver the baby immediately. The cause is unknown and the symptoms easily dismissed as pregnancy malaise and indigestion.

“Straight away” turned out to be 2 hours later with a further injection due at 2am. After several hours in a small hot room full of women more pregnant than me, I was allowed home briefly “to pack”.

HELLP Syndrome Emergency delivery

Evening: I was immediately admitted to the labour ward.  I was 29 weeks and 3 or 4 days pregnant. The next morning, a consultant did another ultrasound to assess the baby’s size.  She said he was around 750g, small, the size of a 25 week baby. Had her estimation been lower, I might have been transferred to a hospital further away. My blood was being tested to see if I could stay awake for the delivery. By a slim margin, they agreed that I could. My blood platelet levels were now climbing: a sign the placenta had stopped supporting the baby. HELLP Syndrome doesn’t directly affect the baby, until it does.

Ted was born by caesarian section just after 11am. So scared, we were relieved to hear him cry out.  A tiny high pitched squeak, he sounded like the baby seagull that had been trapped in the guttering outside our hotel window a week earlier.  Wrapped in a towel he was waved in front us.  For 36 hours I’d only seen the top of his head.

Apart from in photos, I didn’t see Ted until Sunday night and even then I couldn’t see his face. He had a ventilator covering his mouth and a mask on to shield his eyes from the UV light treating jaundice. Early pictures show him in a plastic bag and a woolly hat to keep him warm.  He was covered in wires and foam padding.  We’ve got quite a lot of pictures like that, taking dozens worried they’d be the only ones we’d ever have.  In the first week I probably spent less than 3 or 4 hours with him as I was still recovering from the HELLP syndrome and being pushed around in a wheelchair due to the surgery.

Ted was exceeding the staff’s expectations, weighing 1020g, around 2lb 2oz, more than predicted and was able to breathe without the ventilator after a few days.  When Ted was five days old, Conservative Party Leader David Cameron visited the Special Care Baby Unit.  So depending on next year’s election result we’ll be able to tell Ted he’s met the Prime Minister.

After six days, I was back home and flowers and cards were flooding in. I didn’t know how to react to “Congratulations!” unsure whether celebration was appropriate yet. I shied away from contact with friends for weeks not having the time or emotional energy to talk. Ted was moved from intensive care to high dependency quite quickly, eight days. After this we felt much more sure everything would work out alright.

We’d still not done any baby shopping.  “You can do it all on the internet now,” people would say, “It’s really easy.”  Easy if you are at home to receive deliveries which I wasn’t. Nor could I drive the car to the shops yet (the surgery) and would only have time if I forfeited expressing milk.

Breastfeeding propaganda was in full force. The size of your baby and the knowledge that your own milk is best for him puts you under incredible pressure. For the next five weeks my routine was visiting the hospital twice a day and expressing milk six or seven times in between. I was supposed to do it in the middle of the night as well but I couldn’t face that. I know breastfeeding term babies directly isn’t necessarily easy but when you’ve barely had the skin to skin contact to bond it’s even harder.  I’d kept asking for a breastpump on the labour ward but all they gave me was a bottle “to hand express”.  I hadn’t a clue how and only accessed a pump twice in the first four days. That I eventually went on to produce milk for ten weeks is quite remarkable.

Although Ted was initially only being fed a few mls an hour, a treadmill of keeping up with demand ensued and I spent a lot of time with one of these green machines.  Little bottles being carried backwards and forwards to the hospital.  All labeled and kept in the fridge or even the freezer if you produced enough of it.  Gina Ford makes expressing sound like something you do in ten minutes.  By the time you’d assembled all the kit, sat there with it and then cleaned and sterilised it all afterwards it took an hour. Six or seven times a day.  People didn’t seem to understand that although I didn’t yet have a baby at home yet I was as busy as if I did.

“Kangaroo care” is strongly encouraged for premature babies to bond with their parents. Opportunities for Ted to come out of his incubator were often dependent on which staff member was around. Some found it an inconvenience. We’d get tangled up in all the wires and we’d have to keep an oxygen tube near his face.  Changing nappies through the hand holes in an incubator is a challenge too.  It felt like doing it with boxing gloves.

The machines would make unnerving bongs and beeps.  Six babies beeped away in our room with three rooms altogether; intensive care, high dependency where we spent four weeks and finally the nursery when nearly ready to go home. Staff would give the beeps a passing glance but now and again there’d be a different noise bringing two of them running. My husband tended to obsess about the beeps.  I tried to ignore them.

Week six: Ted was moved to the nursery and we could “room in” for a couple of nights. This meant you slept on site looking after your baby independently but the staff were on hand incase of any problems. Ted wasn’t that bad keeping us awake. But it was the height of summer and the room was directly above the labour ward.  Quite an education for my husband who had not had to witness me giving birth naturally.

At exactly six weeks we were able to take Ted home.  He still only weighed 3lb 12oz (around 2kg).  We were so relieved to have him home and not have the pressure of visiting the hospital twice daily.  We were very fortunate that apart from being small, Ted hadn’t had any serious developmental problems.

I’m obviously biased but people often commented on what a lovely healthy looking baby he was.  They could never believe he’d been so early.  The tube feeding in the hospital seemed to have affected him. Weaning took 18 painful months.  Tiniest lumps in food made him sick and he was still on jars of slop (refusing my cooking!) whilst his friends tucked into roast dinners.

I’m pleased to say that now he is two years old he eats heartily and runs around like you’d expect.  We’re a little late with the talking but we’re working on that.  I never forget how things might have otherwise turned out, the plaques lining the walls of the baby unit focus your mind on that from the start. I know we are very very lucky to have such a beautiful little boy who has come through this difficult start seemingly unscathed.  He draws on my walls, he pulls everything out of my cupboards.  He is addicted to Charlie & Lola and crazy about trains. We really are very very lucky our HELLP syndrome story had a happy ending.