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I had HELLP Symdrome – Brodie’s Story

I had HELLP Syndrome | NICU
Trigger warning: this birth talks about HELLP Syndrome, NICU, emergency caesarean and birth trauma. If you are triggered by these topics you may wish to skip this blog or read it once you have support available. If you are seeking support for your birth trauma, you may wish to join our Facebook Page and contact our Peer Support Service.
I Had HELLP Syndrome

My unplanned pregnancy was relatively ‘easy’ (apart from the stress of bringing a baby into an unhappy relationship). I didn’t vomit once and was still training pretty hard. It wasn’t until the 24 week mark that I mentioned to a close friend that I had started experiencing an odd pain after I ate but we both put it down to indigestion. I went to a check-up the day before I flew to NZ to see my family. Everything seemed fine despite me still being very small and not having a bump yet.

After a few days on my holiday, the pain I was experiencing started to become a lot more severe, it wasn’t just after food anymore and was worse at night. The upper Abdo pain was starting to affect my breathing. I was popping panadol and pretending that I was ok but my family knew me well enough to know something wasn’t right. I went to the pharmacy to get indigestion tablets and I was asked how many weeks along I was. When I said 24, it was suggested that I should go to a doctor as I was too small to be experiencing indigestion from my pregnancy.

I lasted another day and finally went to see a doctor. It was a Saturday and they were only open until 12:30pm. It was 12:20pm and I had waited an hour and I was about to leave when the doctor called me in. The doctor spent a lot time with me and examined everything and couldn’t find anything textbook about my condition but she knew something wasn’t right. She got me into the hospital to see the Obstetrician, despite me saying I would be fine to fly home to Australia on Monday and wait until then.

Once my bloods were taken at the hospital, I could tell by the staff’s reactions that something was wrong. I was going to be flown by the flying Doctor’s service to the nearest city, Christchurch. They didn’t know why exactly but they didn’t have the facilities to have a premature baby.

Now I was freaking out. I was barely showing. I knew that my baby wouldn’t be big enough to survive. I was flown to the city and basically left in a room until 2pm the next afternoon. All I was given was painkillers for my now debilitating pain and was told nothing. I was ringing my parents back in Australia and telling them not to worry. My ex-partner was still in Australia and he was by no means stressing yet.

When I was finally wheeled into the scanning room, my life changed forever. The poor lady that did the scan had to tell me that the pain I had been experiencing was my liver and that my baby didn’t have much blood around her. She had stopped growing two weeks earlier.

I was a mess. It was all my fault. I knew I was too small; I shouldn’t have come to NZ. I had to sit in a wheelchair and listen to her make the call to the Doctor “She is a very sick lady; her liver is shutting down and baby needs to be delivered in the next 24-48 hours”

Everything after that was a complete blur. I went back to my room and my aunty was there waiting and I collapsed in her arms whilst I blamed myself for everything and said she’s going to die and it’s all my fault.

My parents came over on the next flight, followed by my ex and his parents. Then I had several steroid shots to try and help my babies’ lungs and to try and mask my symptoms for as long as they could. The safest place for her was still inside me until my body couldn’t handle it anymore.

I had HELLP syndrome. A rare case of preeclampsia that I had never heard of before. It is meant to happen after 34 weeks. There is nothing they can do once it occurs and the baby has to be delivered to save the mother’s life. The placenta had stopped feeding the baby and is now poisoning the mother. If my baby didn’t come out, I was going to die. At that point, I wanted to die. I would rather have died than lose my baby.

We did a tour of the NICU where our daughter would go if she survived. They gave her 30% chance of survival and said we could be there 6 months if she made it. I said I didn’t care as long as she made it.

I was a pin cushion at this point. My bloods were taken every 3 hours and my veins were all bruised. I didn’t care. Then they finally reached the point where it wasn’t safe for me anymore and she had to come out. I chose to stay awake during my C section as it was better for my baby but I didn’t want to hear what was going on. She came out screaming at 510g before she was incubated and wheeled off to the NICU. I was sewn up and sent upstairs and had a male midwife for my first experience of expressing milk.

Billie Ava spent 7 long months in the NICU before we were flown back to Australia with her on oxygen and a feeding tube. My relationship with her father ended when I was still in NZ with Billie and she was tube fed until almost 18 months. We faced many challenges in her NICU time including losing her three times but she always came back. She was a fighter and is meant to be here.

Here are five things I would say to another mother who has shared a similar experience:

  1. There was nothing you could have done in any way to prevent this happening. It was nothing but terrible luck and not at all your fault. I lived with horrendous guilt every day that Billie fought for her life. These thoughts still sneak up to this day when I see her struggle to put weight on or meet developmental milestones.
  1. When your baby is in NICU, especially for over 6 months like mine, you do NOT need to be there every waking minute. I lived with terrible guilt if I wasn’t next to Billie for 12 hours every day. You need to rest and repair your body and mental state. Your baby is in the best hands and most of the time, there really isn’t much you can do!
  1. Grief is allowed. Even though I didn’t lose my baby, I lost my pregnancy, the big belly I dreamed of, the maternity photos and holding my baby once she was born. That is all still a loss. Even harder when you realise you probably won’t ever get another attempt at it. Never feel guilty for feeling that loss.
  1. Use your experience to help others. I didn’t realise it at the time, but I helped many other Mum’s in NICU who were going through something similar. I helped just by being with them and telling them our story. Showing them my baby months down the track, when she wasn’t so sick and was starting to smile. She gave others hope. I also want to help awareness around Preeclampsia and I plan on doing some marathons and ultra-marathons to raise money for the wonderful charity, Running for Premature babies.
  1. This is not your body’s fault. It does not need to be punished for what it didn’t do. You need to look at your perfect tiny girl and realise that my body did something right and she is here in front me and I am forever blessed with my miracle.

Billie has changed my life in so many ways. I know just how blessed I am to have a tiny but feisty and healthy 4 yr. old. I know my experience was tough but I have only just begun recognising it as traumatic so being an advocate is a healing experience for me. I still often wonder why me; what did I do to deserve this birth trauma? I will always blame myself when I see the struggles my daughter will have in her life from her prematurity. I would love another baby but I have a 50% chance of it occurring again and would be closely monitored. I would be so happy to get past 30 weeks if I was blessed with another baby.

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