Written by Alexander's mummy, Katie
I remember that when I first read the statistic that 1 in 3 hyperemesis gravidarum (HG) pregnancies resulted in baby loss (through termination, miscarriage, still born or neonatal death) I couldn't believe that would happen to us. I truly believed that after the months of misery no way could we be that unlucky. I used to say that as I had such a terrible pregnancy, I was going to have the easiest birth and the best-behaved baby.
We found out we were expecting in early December. It’s strange - I thought when you were pregnant it would feel different, but I felt just the same, it didn't initially seem real, I didn't feel pregnant. But just a few weeks later the nausea started, and it wasn't too bad at first, it was actually comforting in a sense. It started to sink in I was really pregnant, we were going to actually have a baby. We had an early scan a few days before Christmas as we were planning to tell a few close family members who we were spending Christmas with, and we got to see his little heartbeat. I was six weeks and we spent Christmas day excitedly talking about how next Christmas we would have a little baby to fuss over.
Between Christmas and New year the nausea really ramped up and on New Year’s Eve the sickness started. I still thought that this was normal and wondered how the human race survived, how people had done this multiple times. It was awful, I just could not stop being sick. I felt like a failure as I was struggling so much, and this is how my pregnancy continued. I hated being pregnant, HG robbed me and my husband of most of the joy we thought we would feel. My husband was amazing, he had to take care of me, the house, everything. I had severe nausea, even the smell of food from the kitchen would make me sick, If food was being cooked the back door and windows had to be opened to try and stop the smell from reaching me upstairs. The sickness was relentless. On some good days I could eat from a small selection of cold food, cooked food was a no-no until late on into my pregnancy where I could eat plain potatoes. On ‘bad days’ it was just ice pops and on really ‘bad days’ I couldn’t even keep water down. I lost 3 stone in weight. Because of the HG I was bed bound for long periods resulting in isolation and poor mental health,. My whole world was reduced to my bedroom and the bathroom. I missed so much socially: weddings, birthdays, just life really. The only thing that kept me going was the thought of having my baby at the end. The only highlights were watching my belly grow. I loved feeling my baby's movements, each kick reminding me it would all be worth it, that no matter how ill I felt my baby was growing and was healthy.
I had 8 hospitalisations throughout my pregnancy due to HG, the last two in high dependency. But despite how unwell I was our baby was doing well. Our baby was a bit like us, camera shy, so at the 12 and 20 weeks scans we had to go back for additional scans to get the measurements they needed but it was great as we got to see our baby more times, and everything was perfect. At my regular midwife appointments we were glad to see the baby’s heartbeats were good and strong and the growth measurements were spot on every time. Everything with our baby looked great and that is what kept us going through such a tough pregnancy.
Three weeks before our baby was born, I was really unwell and spent a period in high dependency where it was not looking good. There were discussions on whether to deliver as I was so unwell, but they managed to stabilise me and wanted to try and continue with the pregnancy as long as possible. But after discharge I was back in hospital within a few days severely unwell again. This time in hospital is still a bit of a blur, it had been a while since I had managed to eat and keep anything down, even water, and still I was being sick constantly. By the Thursday I was desperately unwell. That day in hospital I started to really struggle to breathe, I felt like I was suffocating. Initially they had put it down to panic attacks but after half a day like that they found the oxygen in my blood was dangerously low, my body was in acidosis and now our baby was starting to show distress. I was to have an immediate c-section.
When I woke from the c-section my husband told me we had a baby boy. He tried to warn me that he wasn't doing well but I couldn't believe it. I was so happy I was a mama, after everything, we had our baby. Unfortunately the doctor advised that there was a delay in starting the c-section as my veins had shut down and we found that in the time it took to stabilise me, the damage was done.
Our son Alexander (named after his daddy) was born at 33+3 on the 1st of July 03.15am with no heartbeat. They managed to resuscitate him after 17 minutes but after tests, it was found that he had limited brain activity and we were told we were going to lose him. Even knowing what the doctor had said when I met him for the first time, I couldn't believe that he was going to die, he was so perfect. He looked exactly like his daddy. His face was an exact carbon copy of my husband, and he has his daddy’s curls, but he had some red through his hair like me. I can’t describe in words the feeling when I finally got to see him for the first time. We instantly loved him so much.
As hard it was to lose him, we will always be grateful for the time we had, those two days were the best of our lives even though at the same time our hearts were breaking, and it meant so much that in that time some of our family got to meet him. We will always cherish every moment we got to spend with him and hold him. He changed us forever. Eventually our time was up, and we had to switch off life support. I held him in my arms as they removed his tubes and wires and got to see him fully for the first time. I took a picture of his perfect little face and told him over and over how much his mummy and daddy loved him and promised him we would love him and remember him forever.
Alexander passed peacefully and quietly at 17.00 on the 2nd of July.
As I was still in high dependency and unwell for a period it took until I got home from hospital before the grief fully hit me and I started to feel the true extent of his loss. The practicalities of his death felt like more cuts into an open wound. Leaving the hospital with a memory box instead of our baby, registering his birth and death, going through the mounds of baby clothes and nursery items, returning the crib, and cancelling the pram. Arranging a funeral.
Eventually there was nothing more to do but face the overwhelming grief and prospect of a future without him. I never knew before how physical grief could be, my arms felt physically empty, my belly felt hollow, and it seemed like the missing weight had settled on my heart, sometimes so heavy it was hard to breathe.
I thank the universe for my husband, even in his own grief, he has been my rock. We both have dealt with our grief differently. I’m more focused on dealing with how I'm feeling, while my husband is more restoration focused, he pushes himself to face people and keeps himself busy to distract himself from the grief. We have come to realise that dealing with the loss differently can be a good thing and we can support each other. He can support me with distraction so I don't drown in the grief and start to try to rebuild my life and I can support him in talking about the emotional difficulties losing Alexander.
In the initial investigation into Alexander's death he was found to be well developed and he had no underlying issues, but it was found there was missed opportunities in my care. There were other treatments and interventions that I could have been given that meant Alexander should have been here today. They are now undertaking a Significant Adverse Event Review to explore fully what happened with me and Alexander. While it breaks our heart that it is too late for our baby boy, the findings from this investigation will hopefully mean no one else should have to go through this, which hopefully will be a fitting legacy for Alexander.
Hyperemesis gravidarum is a horrible condition. HG robbed me and my husband of most of the joy we thought we would feel during pregnancy, it has robbed me of my relationship with my body, my relationship with food. Above all it has robbed us of our baby boy. Awareness is so important, while I was lucky to have very caring and sympathetic midwifes and doctors, more awareness of HG and treatments could have meant Alexander would be alive today.
Losing a baby is so hard and we are still in the early days of navigating dealing with the loss of Alexander. But one thing is easy: keeping the promise we made to our baby boy, to love and miss him forever.
