When Molly got severe early onset pre-eclampsia in her second pregnancy, she didn’t even know what it was. She just knew something was not right and nobody seemed to be listening.
“I had never heard of pre-eclampsia until I became severely unwell with it at 25 weeks pregnant. I started to feel unwell around 22 weeks and had swollen legs, had gained a lot of weight went from a size 6 to a size 10/12 in the space of a week, had severe migraines, I even had dreams of blood pressure machines and my baby dying, midwives dismissed all of this and reassured me it was normal to gain weight and normal to have some swelling of the legs in pregnancy.
I went in for a 25 week appointment and was found to have +4 protein in my urine, the midwife and consultant both overlooked this. I went home and continued to feel severely unwell and had a sense of doom. I called the midwives who once again reassured me everything was fine. The next day I woke up with awful pains in my upper abdomen as well as more weight gain and a puffy look about me. I rang the GP surgery at 8am who booked me in for 4.30pm that day. I went to visit my younger brother who was off work for the day as he was on a 24 hour blood pressure monitoring test, he took my blood pressure more just as a joke and found it to be 169/107 he told me to call the midwives.
I called at 1pm explained to them I had +4 protein the day before and now high blood pressure, they told me just to see me GP at 4.30pm. I feel they should have told me to come straight to the antenatal clinic. I continued to feel unwell, attended the GP surgery at 4.30 to find +4 protein again and blood pressure of 170/110. The GP told me I had pre-eclampsia and he had never seen it so early. He told me to take myself off to the hospital, placing no urgency on this.
I had no idea what pre-eclampsia was, bearing in mind the hospital was an hour drive away and I was alone with my daughter, I stupidly took her home and made her dinner before driving me and her to the hospital alone, I thank god that I didn’t have a fit or a stroke whilst driving alone with my daughter. I feel as though the GP should have called me an ambulance. I arrived at the maternity department with still no sense of urgency. I sat in a waiting room for three hours before I was even assessed, by this point my blood pressure was in the 180’s and at a point of no return.
Straight after being assessed I was rushed to a side room surrounded by midwives, consultants and anaesthetists, told I had a severe early onset of pre-eclampsia and that delivery was the only cure. I was taken straight down to labour and delivery ward and administered labetalol IV as the oral route hadn’t worked and my blood pressure was continuing to rise. They then started me on a magnesium drip which was hell on Earth I felt like my body was burning from the inside out, I lay in a hospital bed alone with two midwives holding me up as I vomited, I thought I was going to die that night with just a midwife by my side.
The severity of the situation had not been explained to any of my family and I didn’t have a clue what was going on. I must have gone to sleep as I remember waking up the next morning and seeing the sunrise out of my window, I couldn’t believe I was still alive. I continued to swell severely, I couldn’t eat as I had a feeling of fullness in my tummy all of this was dismissed as indigestion, I also developed a severe cough that took my breath away, two days later I had a scan which revealed fluid on my lungs and abdominal ascites.
I feel as though my concerns should have been listened to sooner. I was a young healthy woman, non smoker, non drinker, with a previously perfect pregnancy; I kept thinking: how could this happen to me?
My local hospital only had a level 2 NICU so I was transferred by ambulance to another county two hours away which had a level 3 NICU ready for delivery. I arrived at Ashford and St Peter’s hospital in Surrey waited around for about an hour then a professor came to see me tapped my tummy a couple of times told me I had massive ascites and said they would be taking me for a C section at 8pm and transferred me to the high dependency unit while I waited, I was given another magnesium drip and fell asleep again.
At 26 weeks pregnant at 8pm I was taken down for my c section, my little boy Hugo was born crying, kicking, yawning and breathing, what a relief after being told he may suffer as soon as he was born. We had a cuddle and he was taken off to the NICU and I was taken back to the HDU. I couldn’t be with him for 24 hours as I was on bed rest and the pre-eclampsia was still on full swing with my blood pressure rising. I finally got to my boy to see a perfect premature baby lying in an incubator, it was a bitter-sweet moment as it broke my heart to see him like that but I felt so thankful he was alive.
All of a sudden he took a turn for the worse. Surrounded by doctors and nurses, they did a brain and chest scan and a doctor came over sat on the floor in front of me told me that his brain was fine but his lungs were extremely premature due to the pre-eclampsia and had probably stopped growing at around 24 weeks. This absolutely devastated me but they had stabilised him and we all believed he would live, even the nurses had faith that everything would be okay. I had other NICU parents reassuring me that my son was in the best place on earth where miracles happen every day, I’ll never forget their support.
The following day, Sunday I popped to and from the NICU from the post-natal unit as much as my health would allow. That evening a NICU nurse came to my room and I was crying before she could even speak and told her “no please no don’t say it” I saw her eyes well up and she left the room. Next thing I knew my son’s neonatologist consultant came into the room, I started screaming as I knew he didn’t work at weekends so I knew this was going to be bad I started screaming “NO, NO, NO please!” he sat down on my bed and told me he would be very surprised if Hugo survived the night and told me I needed to be with my son. My vision started to go all blurry and the migraine came back I knew my blood pressure was rising again so it was another hour before they stabilised that with medication.
I finally got to the NICU and saw my son laying there looking beautiful but ever so unwell, I asked him to keep fighting, I watched on helplessly for five hours as the doctors kept draining his chest as he was suffering from respiratory distress syndrome and pneumothorax, I watched his stats go down and I told him “it’s okay Mummy’s here if you’ve had enough fighting you can let go now.”
Five minutes later the doctors gave up, they told me they had done everything they could do and I truly believe that they did, swaddled him in blankets and placed him in my arms to take his last breaths. They took me to a bereavement room and for some reason I opened the window to let his soul out.
Four days later I was discharged still on blood pressure medication as the pre-eclampsia continued postnatally, I feel like there’s lots of lessons to be learnt from my experience, and I went through a serious incident investigation with my maternity care hospital where they said training would be implemented with regards to my signs and symptoms being dismissed and a traffic light system at the maternity DAU to prioritise more severe presentations so they aren’t left waiting as long as I was in the waiting room. Whether or not earlier intervention would have stopped things getting so bad and meant that my son would have had more of a chance in life, I will never know but I do believe there’s a chance it could have.
I feel like midwives should take concerns such as swelling, migraines, upper abdominal pains, severe weight gain, mothers gut feeling and protein in the urine more seriously and that mothers should be made more aware of pre-eclampsia as if I had known what pre-eclampsia was I would have known that I had it. I had no idea what was wrong with me I just knew something wasn’t right and that I didn’t feel like a healthy pregnant woman. I also believe that if by fate my brother hadn’t have been off work that day monitoring his own blood pressure that I wouldn’t be here to tell the tale as I was debating cancelling my GP appointment as it clashed with a party my daughter had been invited to.
My brother urged me, saying with blood pressure like that I needed to prioritise the GP. If I had cancelled I would probably have had a stroke or seizure in my sleep that night and died. My daughter could have woken up alone to find her mum dead after midwives had ignored all of my symptoms and test results, and fobbed off my phone calls of concern for well-being. I wish that no other woman ever goes through what I went through and that enough awareness of pre-eclampsia is raised so that midwives and mothers fully understand the early warning signs to look out for.”