Please be aware Katie has chosen to share a picture of Alexander with her story.
“I remember when I first read the statistic that one in three hyperemesis gravidarum (HG) pregnancies resulted in baby loss (through termination, miscarriage, stillbirth 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, 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, my 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. 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, I swear I could smell the food in the fridge and forget about the smell of cooking. 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 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 three 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 eight 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 extra 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 my 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 weeks and three days on the 1st July at 3.15am 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 had 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 as it was to lose him, we will always be grateful for the time we had with him. 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 during 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.
Remember My Baby took pictures of us as a family of three before our son passed. Our photographer was amazing with us and Alexander but we haven't been able to look at the pictures taken that day yet. One of the parts of losing a baby is that you have nothing to look forward to, and can’t experience anything new with them. Knowing we still have pictures that we haven't seen yet and something still to experience is a comfort to us at the moment.
Eventually our time with our baby boy was up, and we had to switch off life support. I held him in my arms as they removed his tubes and wires and I got to see him fully for the first time. I took my favourite 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 5pm on the 2nd July.
SiMBA charity provided us with a memory box, and the charity also made the bereavement suite in our hospital. Unfortunately, we were unable to use it when Alexander was alive as I had to remain in high dependency as I was still unwell for a period, but when I was more stable I was able to move into the bereavement suite allowing my husband to stay with me so we could be together after losing our son.
It took until I got home from the hospital before the grief fully hit me and I started to feel the true extent of Alexander’s 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 was fortunate to receive counselling from the hospital psychologist due to issues with being able to eat after my HG and losing Alexander, and the Sands helpline supported me with my grief when I had a few really bad days in between my counselling sessions. I also found the Sands website useful for finding information on dealing with grief, reading other people's stories and information on the investigations after Alexander’s death.
I thank the universe for my husband too, who even in his own grief 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 busy to distract himself from the grief. We have come to realise that dealing with our 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 so I can 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 were 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 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 also a horrible condition. It 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 and 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 midwives 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."
