HELLP Syndrome and Baby Loss – Trust and Follow Your Instincts

When your gut feeling that ‘something is wrong’ is dismissed, you can feel very alone. Researching rare disorders, or possibilities of your condition may feel futile, as when you see stats as small as 8%, 5%, 3%, you may think, “that’s unlikely to affect me”. The Pre-eclampsia organisation urges you not to ignore the warning signs and to report them to your healthcare professional immediately. 

So, what is HELLP Syndrome? Related to pre-eclampsia, HELLP syndrome complications can be devastating for both the mother and the child, and has a reported mortality rate of 30%. As such it is critical to be aware of and you should be vigilant, for an early diagnosis.  A positive is that HELLP Syndrome is treatable and the mortality rate improves significantly with quick and proper diagnosis and treatment. So, when something feels like it isn’t right, insist on an assessment of your symptoms for HELLP, especially if you are a person who suffers from pre-eclampsia. 

To learn a bit more about a disease you may not have heard of before, read this personal account from one of our strong FHH contributors, of her experience with HELLP. and devastating baby loss.

The Anticipation

We have been trying to conceive our family since 2013. Following a partial molar pregnancy, a missed miscarriage, the diagnosis of ulcerative colitis for me and a third miscarriage, we were understandably incredibly happy, albeit cautious, when we fell pregnant again in December 2015. The pregnancy was a dream. I loved being pregnant and enjoyed all aspects of it. I found my changing body fascinating and was in awe of the way nature worked. 

Ludo and I would read stories to the bump on a regular basis, so that he could hear our voices and, once a day, we would sit down with the iPad and play him the same song – Radiohead, ‘No Surprises’. Our aim was that he would recognise the song once born and it would help to comfort him at night. We talked to Mathijs daily, felt the kicking, the hiccups and the movement and we were counting down the days till his arrival. 

The Pain Begins 

I started my maternity leave in mid-July.  It was so hot – I loved being at home in our cool house and having quiet walks in the fields. We purchased everything we’d need: mattress, pram … and my sister-in-law passed over a ton of clothes for all ages, handed down from her tribe. We decided on a coming home outfit for Mathijs, I prepared the house, washed all the clothes, we finally made up the bed and drawers we had purchased back in 2013 during our first pregnancy and all was ready for Mathijs’ arrival. 

On August 12th  I spent a terrible night trying to find a position that would relieve the incredible pain in my left shoulder and, the following morning I decided to see an osteopath as the pain just wouldn’t go away. I felt like Mathijs was pulling on a nerve linked to my shoulder. The osteopath provided a little relief, but it was short lived and, that same night, we went to the emergency room at the hospital. I still had the shoulder pain and I was having strong contractions. I was transferred up to the maternity ward and examined by a midwife who told me that I wasn’t in full labour yet and I was sent home. 

The following day, we returned to the hospital again as the pain in my shoulder still wouldn’t go away. The doctor prescribed me pain killers and sent home, but the medication made me sick and I couldn’t complete the treatment plan. I returned again on the Tuesday morning to see a doctor, as I felt uneasy but the doctor assured me I was just at the end of a pregnancy and all was ok.  I remember after this trip Ludo and I joking that Mathijs had to hurry up and make his appearance as the hospital visits were draining. We were becoming exhausted before the arrival of our newborn, not a good start!

Symptoms Persist 

On the Tuesday, early evening, I had a pain just under my chest, on the right-hand side. The pain was constant, like a contraction that didn’t stop, but higher up than other contractions I had experienced. I vomited twice and I felt terrible. We called the ambulance service for their advice as to whether I should go to hospital and they sent out a vehicle. 

Despite the way I was feeling, we were excited … this was it; our son was coming!  When we arrived at the hospital, we explained the past few days to the midwife. She put Mathijs on monitoring. The results showed that he was fine and that I was in the early stages of labour. She decided to keep me in overnight and told us we’d have our son the following day. I told Ludo to go home and to make the most of his final full night of sleep, as it would be a few years before he could have another one!  

After this, my memories are few and far between. I remember the doctor telling me I needed an emergency c-section and giggling to myself as the nurses tried to put in my IV. I said to them “everyone always struggles with my veins”. Little did I know they were struggling and panicking as they had a limited time to get me to theatre. I originally thought all this happened on the 16th in the evening, when in fact it was the following day. At the time of my blood test in the morning, I had Class 2 HELLP Syndrome. By the time they took me to theatre, I think it was Class 1.  I convulsed in the elevator and was critically ill by the time I reached theatre. 

Fighting Against Fate

Upon arrival, the battle was on to save my life. The mother gets saved first you see, baby second. Once I was more stable, they delivered Mathijs. Ten minutes later they stopped trying to resuscitate him, it was too late. Our son was pronounced dead at 10.10am.

I suffered a full liver rupture. The doctors continued to work on me, stopping the haemorrhaging around my liver, which was no longer in working condition. They patched me up so that I could be transferred to a more specialist hospital and I was transferred at the end of the morning, once I was stable enough to travel.

Ludo was called in to the hospital that morning, to hear that his son had not survived and that his wife was in a critical condition due to the onset of HELLP, a condition we had never heard about. Despite the shock, he also had the impossible task of calling my family to tell them the news.  When my mum and Mick arrived, they were able to meet their grandson, and Ludo, his son. They spent time with him, holding and cuddling him, and taking the photos which are so important to us now. 

I received a full liver transplant 48 hours after losing Mathijs and spent six days in a coma following the transplant. When I awoke, groggily, it was to hear what had happened.  A couple of days later, the full weight of what had happened hit hard. I had carried our little boy for 9 full months, felt him growing, moving, kicking, hiccupping, and yet I didn’t get to meet him. Added to that, I also couldn’t attend his funeral because I was still so ill. I had no idea how to get through the trauma, nor how to continue our life without our son.  

Related Article – Termination for Medical Reasons – A Baby Loss Never Talked About

Recovery 

I decided to face my physical battle first and, in total I spent just over a month in hospital.  Once home, I had to battle with everything: the empty house, the memories of Mathijs and the prospect of life without him. My husband was reeling from the enormous trauma he had suffered, and we hung onto each other trying to move forwards. 

The months passed, and Ludo and I pushed through them as well as we could. Mathijs was a constant part of our conversation, a candle was lit for him frequently and we began to live our “firsts” without him: first Christmas, first Mother’s Day, first Father’s Day, first birthday … all equally as difficult. The first year was raw, testing and still difficult to look back on. I lost my social confidence and felt unable to face the world without Ludo by my side. I returned to work five months after the trauma and was supported and protected by my amazing colleague and friend, but elsewhere it was just too much for me. I remember trips to the hairdresser and the post office where I just burst into tears. Being outside made me feel vulnerable and exposed, and it took a long while for the fear and panic to subside. To this day I still hesitate when I receive invitations to events where there will be people I don’t know, or when I know there will be babies or pregnant women present.

Most mothers who are as ill as I was don’t survive, I believe there were only four other documented cases in the US at the time. Often, the doctors don’t risk the transplant as the mother’s health is compromised, or a liver isn’t found in time. I was lucky that the doctors took a chance with me and that a liver was found in time. “Lucky”.  I’ve heard that word so many times in the past four years and it is still hard to accept it as my emotions are so confused around what happened.

Mathijs is, and always will be part of our family. He’s in our hearts, our thoughts and our day to day conversations, despite never coming home and never meeting us. There are no words to describe the pain of losing a child, and the pain never leaves. You just learn to get up and keep going, and to remember your child in the best way you can.  

Related Article – Baby Loss, What if…

Our Future

In 2018, after hearing that I could no longer naturally conceive, and I wouldn’t carry our child, we decided to start up the adoption process. The desire to start a family was so strong and we knew we had to keep going in this direction. Each time I see Ludo playing with his nephews, my heart tugs. I’d love to see him playing with his own child and I am desperate for our house to be filled with all the mess, noise and challenges a child can bring. Our application was accepted and we’re on the waiting list for our region. 

There are no guarantees that we will become parents in the flesh one day but we’re doing all we can in order to move from the not quite parent status that we have held since 2014 and to welcome a child into our home. 

Related Article – Parenting After Infertility

A little more information…

HELLP syndrome (named by Dr. Louis Weinstein in 1982) has the following characteristics:

• H (haemolysis, which is the breaking down of red blood cells)

• EL (elevated liver enzymes)

• LP (low platelet count)

HELLP syndrome can cause major complications including seizures, strokes, placental abruption, or liver rupture.

HELLP syndrome is a condition that is rarely discussed with pregnant women.  Surprisingly so, because it is a complication of pre-eclampsia which occurs in 1-3% of pregnancies in France (https://www.doctissimo.fr).  If you are looking for HELLP Syndrome information in the UK, you can check out this from NCT.

For further reading on HELLP syndrome (UK or further afield), visit https://www.preeclampsia.org/hellp-syndrome

Tommy’s Charity in the UK talks HELLP Syndrome and pre-eclampsia here.