My Story - Abigail, An Irish Expat in The Netherlands
As I was an “Older” mum (thankfully nobody referred to me as geriatric), I was anxious throughout my pregnancy. Like many women before me, all I wished for was a healthy baby, it was my single focus. Every scan I held my breath until I heard that the baby was doing well, even at a later scan when the midwife saw that my placenta was low I didn't worry as the baby was doing great.
Due to the placenta placement, I was put under a consultant's care for the end of my pregnancy. Throughout this process I stressed to the doctors that I was fine with a vaginal birth or caesarean section, I just wanted what was safest for the baby. At my final appointment, I stressed this again, and the doctor replied 'Ït not the baby that has the risk' (love Dutch directness). I honestly didn't think much about it again. I was super healthy and felt I had nothing to worry about.
I had a great pregnancy, albeit, in the midst of a global pandemic, I had no morning sickness, all tests and scans came back healthy and positive, and none of the obvious struggles I heard about. I was able to exercise, I was walking 10km per day. I walked 10km the day before I went into labour! I had been highly active before the pregnancy. Everyone commented on my energy.
On the evening of 1st July my water broke, there was meconium so we went straight to the hospital. The process was long and they decided to do an induction, pretty soon after that I threw my birth plan out the window and asked for all the pain drugs they could offer! The midwives and doctors were going back and forth about if they were going to perform a caesarean section. I kept telling them I was happy to do this. I did not want to end up in an emergency situation as the risks increased. The Dutch maternity system is extremely pro-vaginal birth and will push for it, so they kept pushing. 23 hrs after my waters broke my beautiful, perfect son arrived into the world. Everything seemed to be ok. I recall the nurses directing me to push hard to get the placenta out, and that's when the energy in the room shifted. I was so focused on my baby. The midwives switched to speaking dutch, more and more people entered the room and alarms went off. The next thing the baby was taken from me. My partner, the Dad, was asked to take his top off to receive our son with close contact as I was being rushed out of the room, through the corridors to the operating theatre. All I remember was the lights in the hospital flashing past me.
I lost 3 litres of blood, about half of the blood in my body.
I came around in the recovery room, and this for me was when the nightmare started. I had no idea what happened, I thought something was wrong with the baby. Nobody would tell me anything. Finally, I was brought back to the room and reunited with my partner and son. Then it hit me, and I felt awful. Tired, weak, heavy and disorientated. My partner was so happy to have me back, and all I could think was something was not right. I received a blood transfusion and was told that it would make me feel better. That night they left us in the room with the baby. I was too weak to pick him up to feed, I had to hit the call button to ask for help to lift him. I remember one nurse scolding me saying “I needed to try harder”. Everything is a bit of a blur. I had an intense headache, I could not open my eyes or lift my head. I was nauseous & could not bear the smell of food. I knew giving birth was hard but I never expected it to be this bad.
Where was my tea & toast moment, cuddles in bed with my newborn, pictures for the grandparents? I was lying in a dark room, in pain, sweating, petrified that the baby would need me and I wouldn't physically be able to do anything. I was sent for a CAT scan for my headache, it showed nothing, they gave me a second blood transfusion and paracetamol. I was brought to shower, everything was a blur around me. Then I was told to go home.
24 hrs after the birth, losing 3 litres of blood, two blood transfusions, 1 general anaesthetic, and an unexplained crippling headache and still the hospital staff thought it was a good idea to send me home with a 1-day-old baby. I have no recollection of that first night, my partner tells me that I was up ‘breastfeeding’ every 3 hours. I was completely blacked out, I try not to think about that night, what if something had happened to my son? I once asked the consultant who discharged me “ If I had drunk a bottle of vodka and blacked out, would you have let me leave the hospital with my baby” he said of course not, but essentially he did.
I don’t remember much of the following days - the pain, weakness, the sweating, I could not bear the smell of anything, and I could not eat. There was a phone call with my best friend that alarmed her so much that she feared I was suffering from intense postnatal depression, my mother arrived from Ireland. All a blur. I recall sitting in a room with everyone around me silently thinking ‘What is wrong with me?’. As the days passed I started to slowly feel a little more normal. I was weak but I was able to care for my baby, every day I waited for my milk “to come in”. I could only produce the smallest amount and I topped up with formula. On top of feeling terrible, I thought I was a bad mum because I could not feed my son.
3 weeks following the birth I still felt weak and disoriented. I had been told the early days of motherhood were tough, but I never imagined this. I had suffered from anaemia in my 20s and my mum encouraged me to go to my GP to get my bloods checked. Thank god I did. The day after my blood tests I received a panicked call from the surgery, followed by an endocrinologist from Amsterdam hospital. Everyone I spoke to kept telling me not to panic (the exact moment you start to panic). The cortisol in my blood test had been so dangerously low that my GP contacted the hospital. The Endo believed I was at risk of going into a coma at any point. They sent cortisol and the next day I was sitting in an Endocrinologists office being told I had Sheehan's Syndrome….
I have what is called acute Sheehan’s Syndrome, this is uncommon. I understand now that I was very lucky to receive a diagnosis so early, the endocrinologist who looked at my blood tests had treated one other woman with Sheehan’s so recognised the markers. Following my diagnosis, it took me some time to really understand the implications of having this illness. Carrying emergency injections, taking 9 tablets a day, injecting human growth hormone,, alarms beeping all day long as reminders. As I researched more I became more dejected, compounding that with post-pregnancy hormones and I was a mess at times. I recall one night at dinner crying uncontrollably, why me? What if I cannot be everything I want for my son? Is he going to have an invalid mother?
Even now over a year on I struggle to deal with the emotional side of things. I am trying to keep everything going and live “a normal” life and I think I am doing well, most of the time. I push myself too hard sometimes and have to take a step back. I feel so much anger towards the hospital and the doctors who put me at risk, and the lack of care afterwards.
I wish I could share a happy ending, but I am only a year into this long journey. I hope that more research and development is carried out, as I truly believe there could be better treatments for sufferers of Sheehan’s Syndrome. But there are silver linings - I have the most wonderful, healthy smiley boy. I am able to care for him and keep up and I am hopeful the communities and advocates will bring Sheehan’s to the forefront and help make advances that benefit patients around the world.