My son’s premature birth and death earlier this year have brought a myriad of emotions. From elation to heartbreak, hope to despair, joy to anguish, confusion and guilt. I have felt fury at the bad luck that this tragedy happened to me.
I have also felt lucky. I am lucky to be alive, and to have spent any time at all with my son.
The reason my son Hugo was born 16 weeks early was because I had severe preeclampsia and severe HELLP syndrome. These are rare, life-threatening conditions that can occur only in pregnancy. The only cure is to deliver the baby, irrespective of the gestation. Without that, both mother and baby are likely to die.
I feel lucky that I chose an appointment at my community midwife’s Monday afternoon clinic, rather than the Thursday afternoon clinic that week. I had made the appointment for my routine 24 week check up far enough in advance that I had the choice.
I feel lucky because had I chosen the Thursday afternoon appointment, it is likely I would be dead.
The short story is: at that Monday afternoon appointment my midwife recognised my symptoms, along with my very high blood pressure and three pluses of protein in my urine and sent me straight to my district general hospital where I was told I was so sick I would have to deliver my baby that night. Fortunately, that did not happen. On the Wednesday, I was transferred to a specialist hospital. By the Thursday morning, my condition had deteriorated: the only way to prevent my body going into multiple organ failure and to give my son a hope of being born alive was to deliver him straight away. I had a Caesarean section under general anaesthetic and woke up in intensive care.
I feel lucky because what would have happened if I had seen my midwife that Thursday afternoon does not bear thinking about.
I feel lucky because I had no idea I was so ill. I woke up that Thursday morning feeling bored after being on complete bed rest for a couple of days, and hungry – I wanted my breakfast.
I feel lucky that I did not have to deliver my baby that Monday night. He was so premature and the district general hospital was not set up to deal with babies who are so small, his chances would have been very slim. I feel lucky that he was given those extra couple of days in my womb to grow a little bit more.
I feel lucky that within a very short time of being admitted to hospital, a central line had been inserted through which I was given magnesium sulphate to protect my brain and my unborn baby’s brain from seizure. I feel lucky that I was able to have the two doses of steroids to help my unborn baby’s lungs develop. I feel lucky I was given drugs to help control my blood pressure, and help avoid a stroke.
I feel lucky that I was transferred to a specialist hospital who gave us both the best-possible chance.
I feel lucky because other women who have preeclampsia and HELLP syndrome are not so lucky. Some mothers die from the condition because staff do not recognise it and therefore fail to give them the appropriate treatment, as happened to a mother in an Essex hospital in 2011. Other mothers die because the illness progresses so quickly and so aggressively that even the most valiant medical efforts are in vain, as happened to a woman in the US in 2013 who died of brain damage.
I feel lucky that I was caught in time and my brain did not have a bleed, my liver did not rupture, and my kidneys did not fail. I feel lucky that as a result, I am now physically at least, mostly in good health.
I feel lucky because these conditions can be silent. The conditions can disrupt blood flow from the placenta, causing the baby to be growth restricted. Hugo was so small, if my condition had worsened any further, he would likely to have died inside of me.
I feel lucky that Hugo was born alive. I feel lucky that I was able to spend 35 precious days with him. I feel lucky that during those 35 days I was able to be his mummy, sing to him, read to him, do his cares, give him cuddles, show him how much I love him. I feel lucky that I got to know what an incredible, spirited, determined boy he is, and have so many stories to tell. I feel lucky that I have so many photos and videos of him to treasure.
I feel lucky that Hugo was in one of the country’s best neonatal units, where he had the best chance to fight for his life.
I feel lucky that I am not in a country in the developing world, where I most likely would have died.
I feel lucky that this did not happen in this country even 30 years ago, when I would most likely have died.
One of my symptoms – extreme breathlessness – concerned me sufficiently to Google it: a possibility was pre-eclampsia. I am probably the only person in the world ever to have dismissed a Google diagnosis. I dismissed it because I didn’t have a headache or flashing lights (I never actually developed those symptoms); my hands and feet were not swollen and besides, I was only 23 weeks’ pregnant at that time – I thought it happened only in later pregnancy.
I feel lucky, which is why I want to raise awareness of preeclampsia and HELLP syndrome. I thought I knew a lot about pregnancy, but did not know the full story about preeclampsia and had never heard of HELLP syndrome. Pregnant women need to know more about the signs, symptoms and the dangers. The avoidable death of even one mother or one baby are one death too many.
I feel lucky which is why, no matter how difficult it sometimes feels, I try to make the most of every day. I try to think that there must be a reason that these very rare, very devastating conditions happened to me, especially so early in pregnancy. It is why I focus on celebrating my son’s life, making sure he is remembered and helping other people in his name. It is Hugo’s legacy.
This sense of luck creates a complication for me psychologically. I have very dark days, when the black dog of depression haunts me. I feel intense guilt about my body’s failure to protect my baby, which are reflected in nightmares and bad dreams. I have terrifying days when the anxiety and panic attacks want to take me over. I am devastated at my bad luck that these illnesses happened to me, especially so severely and so early in my pregnancy. These are, I know, ‘normal’ (if there can be such a thing) responses to grief and trauma. The trouble is after these bad days I then feel guilty that I have ‘wasted’ a day of my life which creates a vicious circle.
I have a sense that the complexity of my emotions have made it difficult for mental health professionals to establish quite what to do with me, and to give me the timely support I desperately need.
There needs to be better understanding of and improved access to perinatal mental health services for all women who have experienced a birth trauma, of whatever sort.
I am utterly heartbroken, and I always will be. There is nothing I would not give to have Hugo in my arms right now.
I know that that is not possible. What gets me through my worst days is reflecting on the things I have to feel lucky about.
Feeling lucky to be alive, lucky that my son had a chance at life and lucky to such an amazing son to feel so proud of.