Who’s next?!¬†

  
Since Isobel died I frequently find myself worrying that I am, or someone else I love is, going to die. 

Shortly after giving birth, I felt incredibly weak and faint. I could barely move my limbs and felt like I was going to pass out but my blood pressure was fine and the doctor did a neurological exam which I had no problems with. I think it was just a combination of the pain relief medication, extreme exhaustion and the trauma of losing my baby. I was convinced that I was dying, having never felt like that in my life. I even said goodbye to Simon! After being sick a couple of times and then some tea and toast I began to come round. 

The feeling that I am going to die hasn’t completely gone though. A pain in my tailbone becomes bowel cancer. An ingrown hair under my arm is breast cancer. A headache is clearly a brain tumour. My latest concern is cervical cancer so I have booked in for a smear test even though I’m not due one until next year. I can’t stress enough how unlike me this health anxiety is. The old me (the real me!) was almost too relaxed about everything. Nothing would go wrong, everything would work out fine. Something would need to be hanging off before I would visit the doctor! As a psychologist I would say that I had an internal locus of control. 

  
An internal locus of control means that generally I felt that life was in my control – that if I did everything I was supposed to do, things would go my way. This was mostly how my life had been before losing Isobel. 

Isobel dying despite me doing my very best to keep her nourished and healthy destroyed my sense of control. Now I know exactly how fragile life is. I know that healthy babies can be starved of oxygen and die, days before their due date. If this can happen, of course I can die too. 

Last week Simon was a little late home from work and his phone was going to answer machine. I convinced myself that he had been in a car crash and had been killed. I could picture it. I worked myself in to a total state and was crying when Simon calmly walked in the door on his phone! I have gone from being the person who ridiculed others for their catastrophic thinking, to being the catastrophiser myself! 

  
I am especially worried about my parents dying. My dad turned 70 this year and my mum is 66 so I guess it’s not unreasonable to be concerned about their health but I never was significantly concerned before. My big worry is that they will pass away before I have another child/children and they will never get to meet their other grandchildren. I see the amazing relationship my parents have with my niece and nephew who have grown up with loving grandparents and I’m jealous that my children (if there are to be more) are less likely to have that due to the age of my parents. 

One of my best friends has just recently gotten the all clear after breast cancer treatment. I did not let myself think that she would die but when I got the news that her surgery had been successful I wept and wept with relief. I was so happy for my friend, her husband and her family but also selfishly for me – that I would not have to face any more loss. 

I have told everyone I know that they are forbidden to die. I have told them I could not cope with losing anyone else. However in my new view of the world, I know that anything could happen to someone I love at any time – and it’s terrifying. 

Three months on

  
Three months ago today I gave birth to a baby girl we named Isobel. She was perfectly formed, weighed 7lbs 2 and was 55cm long. She had her mummy’s nose and her daddy’s lips and chin. On reading these facts, the understandable assumption would be that I now have a three month old baby. However in the parallel reality in which I now reside, carrying a healthy baby to term does not equate to taking a live baby home from the hospital. Due to a problem within my placenta, Isobel was acutely starved of oxygen and died, just six days before her due date. She was born still almost two days later and buried on her due date. The day that we waited for with such excitement, became the day we watched a tiny white coffin descend to the ground. I still don’t feel capable of writing about the extreme trauma of that time. Today, three months on, instead of a three month old baby, I have a phone full of pictures of a perfect but still little girl, a memory box, a cemetery plot and a house full of unused baby things. 

Isobel was the baby that I have wanted my whole life. More specifically she was the baby I had dreamed of ever since meeting the person I wanted to have a family with. Even more specifically, Isobel was our miracle baby – surprising us as we languished on the IVF waiting list after two years of fertility issues due to my PCOS. Most pregnancies, planned or unplanned are or at least become a joy, but I do believe those that come after a struggle feel all the more special and joyous after what has gone before. To lose our miracle baby just six days before her due date, and many weeks after she could have survived outside my body is a horror that I could never have imagined. 

I know some people find it hard to understand the magnitude of the loss of a baby prior to birth, thinking perhaps that it is an abstract loss – the loss of something you never really had. Unless you or your partner have been pregnant it must be hard to understand how life changes for a couple over the course of a pregnancy. Almost every conversation revolves around the baby and your life ahead with the little person you cannot wait to meet. Countless hours are spent reading about pregnancy, labour, caring for a newborn and researching all the things a baby needs. Pregnancy apps and forums are consulted daily. Time and energy is invested in pregnancy yoga to help maintain flexibility around a growing belly. Weekends are spent looking at prams, car seats and breast pumps in between building IKEA furniture to hold all the baby clothes, wipes and nappies that you’ve purchased. Weeks are punctuated by medical appointments and counting down the days until the next opportunity to get a peek at baby and listen to their beating heart. Evenings are spent staring in amazement at the ripples of a stomach moved by the life inside. I knew how Isobel reacted to different foods, how she would move differently at different times of the day, how she would respond when her daddy spoke to her, how she loved music, and how she would poke back when we poked her. This was not an abstract loss, something not meant to be. Isobel was our daughter, she lived, we knew her. 

  
Pregnancy is not just a time of practically preparing for a baby, it is preparing psychologically for a new identity as a mother and within a relationship for a new dynamic as parents. Mothers and fathers are ‘born’ long before the baby is. Physically after giving birth, it took my body weeks to understand that I did not have a baby to nurture. Psychologically, that understanding has been harder to grasp – or at least to accept. For those months of pregnancy I was not just expecting a baby, I was expecting the rest of my life. Biding time until the next stage of my life would begin in earnest. The life that was adequate before pregnancy now feels woefully incomplete. Everywhere I go I have the feeling that I’ve forgotten something, everything that I try to do feels wrong. I am living in a nightmare and I don’t know how to wake up. The world is in parallel. Things are not as they should be.
Three months on, there have been so many secondary losses since losing Isobel. I could never manage to even allude to all of these in one post. I have lost parts of myself, my core beliefs, that made me who I was. I find myself thinking, coping, relating to others and behaving in ways that are unrecognisable to myself. I read stories of people who grow through tragedy and trauma and come to appreciate the ways in which they have changed. Maybe someday I will feel that way however for now, it is the most extreme understatement to say that the new me is not to my liking. 

  
Three months on, Simon and I are working so hard to walk this tightrope of life after loss, holding both our grief and our determination not to let the legacy of our baby’s life be a negative one. It feels precarious and often impossible. Sometimes we don’t want to walk at all. Sometimes we think we have made progress only to find ourselves suddenly back at the beginning wondering what has happened. On good days we manage to steady each other; on bad days we watch helplessly as our partner falls, too broken or weary ourselves to be able to offer any support. 

Three months on, so many people have reminded us over and over again that though we feel isolated we are not on this journey on our own. They have acknowledged our loss. They have asked how we are and not minding hearing the truth in response. They have listened to horror stories, medical details and tolerated the words ‘post-mortem’ and ‘baby’ spoken together when no sentence should contain those words. They have given us the simplest but most precious of gifts: saying or writing Isobel’s name. They have looked lovingly at her pictures understanding how happy it makes us to share them, strange as that may seem. They have told us they too miss our baby and have felt her absence. They have promised that it won’t just be us who remembers her. We are so grateful to those who have reached out, opened up to our pain and allowed us to use them as a balancing pole. Three months on, I wish I could say I am finding my balance without this help. The truth is that time only brings new challenges, fresh realities, and I need everyone there, balancing poles, harnesses, safety nets and bandages at the ready. 

Heartbreak on tour…

  
For my sister’s 40th birthday this September she decided to take her two children (aged 11 and 14) to New York. Initially when she started talking about it last year, Simon and I thought we’d probably be starting IVF around then so weren’t planning on going. Once we found out baby was on board, we then thought we’d have a new baby to care for so were happy to sit out the trip in favour of dirty nappies and sleepless nights! A few days after Isobel was born asleep, we started talking about going to New York with them and decided it would be good to have something to plan and look forward to. We decided to take Simon’s 15 year old son too, and make it an opportunity to spend some quality time with him which can sometimes be tricky with a teenage boy! I’m really close to my niece and nephew and hanging out with them makes me feel closer to normal than most other things! So over July and August we sorted flights, hotel and spent time planning what to do and most importantly where to eat! Part of me was worried that with such a big financial outlay the trip would be wasted if we ended up being miserable there and not enjoying it!

I needn’t have worried about that. It was so so good to get away. New York was a change of scenery, a change of culture and a hectic change of pace! We did all the sights and made great memories that I hope the kids will always treasure. Overall Simon and I were in good form. We were so busy and active during the day that we slept well at night. It was lovely seeing my sister and her family every day and great to have quality time with my stepson. I still thought about Isobel constantly – almost literally. But somehow the thoughts felt different with being away, easier to hold, more bittersweet than unbearably sad. 

  
There were a few times when I was upset and cried. We did a guided tour of Central Park which finished at Strawberry Fields, the John Lennon memorial garden. It was packed with tourists, people were leaving roses, taking pictures, crying, and there was a really stereotypical hippy type playing Beatles songs. I was overwhelmed with sadness, not for John Lennon (sorry John) but for Isobel. My baby who never got the chance to influence the world, to touch the lives of millions of people, to have a memorial visited by people from all over the world. It felt so unfair that all these people really cared that John Lennon had lived and was gone, and yet such a tiny amount of people know of Isobel and mourn her. I had a little cry behind my sunglasses and people probably thought I was just a massive Beatles fan. I was then distracted out of my tears by the arrival of Yoko Ono! Our first and only celebrity spot in NYC but a pretty good one. She still lives in the apartment building across from Central Park where John was killed. I imagined how difficult it must have been to walk past that spot every time she goes in and out of her apartment but I guess that the positive memories of her home with John must outweigh that. Tenuously similarly, people keep suggesting that Simon & I move house, thinking we need to get away from Isobel’s room. I don’t think they understand that we want to be close to her, and that reminders of her are so deeply ingrained in us that physical reminders can’t cause any more pain than we already feel. Anyhow, back to New York!  

We also went to the 9/11 memorial and museum. Of course it was emotional. I can’t imagine many people visit and remain unmoved. I can imagine however that not too many people go and feel jealous of the people who died that day, but I was. I recognise that may sound insane! Certainly the way many of them died, with awareness and with fear is not preferable to how Isobel passed quietly inside me. However again, it was the memorial and immortality through remembrance aspect that I was jealous of. Those who sadly died that day have a whole museum dedicated to their pictures and stories, their names surrounding a pool read aloud or internally by strangers on a daily basis – their lives are acknowledged by thousands of people from all over the world every day. They will not be forgotten. The quote above, forged from recovered metal of the World Trade Centre says exactly that. Compared to this, Isobel’s little grave and my few blog posts seem so insignificant a memorial. 

  I suppose on reading what I’ve just written my fear is that Isobel will be forgotten. Not by me or Simon, as I know that will never happen. (I feel guilty even thinking it but sometimes I wish I could forget her for a while just to get some relief from the sadness.) I know she will always be remembered by us but who else? 

I usually hate attention seeking ‘sad’ status updates on Facebook and since Isobel died have only posted motivational things – like when I ran my first 5k, or went back to yoga. But with these posts and my smiling New York pictures I’m now worried that everyone will think I’m doing great and have moved on. Why I care what random Facebook friends think is a pondering for another post! I find myself tempted to post a sad or even a borderline suicidal status just to remind the world how awful I feel, how pointless my life is, how much I have lost – to remind them of Isobel. I posted her picture in a closed stillbirth support group a few days ago when I really wanted to post it on my own page. I haven’t done this as I know not everyone is comfortable with seeing her picture and I don’t want anyone looking at her with anything less than love. However seeing dozens of baby pictures every time I open my newsfeed and not feeling able to share the few pictures I have of my baby is really hard. As I contemplate going back to work in the next month or so – the ultimate sign of being ‘ok’ – I worry that Isobel will disappear from the consciousness of those around me. A difficult time that is now over. A war survived. 
Being away was amazing, coming home to reality and a house/future without my daughter has been so so hard. In my mind this war that we’re fighting has only just begun and I don’t want people to forget that. 

Massive Perivillous Fibrin Deposition 

  
We had our post-mortem results meeting last week. It was a horrendous experience from start to finish. Even going back to the maternity hospital was such a trauma trigger. We were directed to the Day Obstetric Unit where I had been for my 20 week scan and indeed there were several couples waiting eagerly to see their little babas. The receptionist who had clearly not been informed that we were coming loudly asked what our appointment was for, forcing us to reply in front of everyone that we were there for postmortem results. I kept my head down but could only imagine the look of horror on the faces of the parents waiting for their scans. The receptionist then went on to ask me where my notes were! How I wish I was there with my notes, with a growing baby inside me. We were then put in a side room and promptly forgotten about for 30 agonising minutes! It was only when I sent my husband out to find out what was going on that they actually let the consultant know we were there. No thought at all seemed to have been given to the fact that being there was excruciating for us and every minute waiting felt like an hour. 

The consultant was less than personable but by that stage we just wanted the results. Contrary to what I was expecting, we did get an answer. Our baby Isobel was absolutely perfect. All her little organs perfectly formed and well grown. The placenta however had grown with ‘fibrinoid material’ throughout. Apparently a certain amount of this material is normal but for some reason my placenta had too much – giving a diagnosis of Massive Perivillous Fibrin Deposition (MPFD). This is a rare condition, affecting only around 0.005% of pregnancies. Usually it makes itself known by causing growth restriction throughout pregnancy however for an unknown reason with Isobel this did not happen and it had an acute effect. When it began to have an effect it starved Isobel of oxygen and they estimated that she was dead within six hours. They told us that MPFD can’t be seen on a scan and aside from monitoring growth, there is no way to test for it. It also has a significant recurrence rate of 15-40% depending on the study. 

How do you process information like this? In some ways I’m glad to know that Isobel herself was perfectly developed and had everything that a baby needs in order to be healthy. However to know that if she had been born even the day before she died, she would have been perfectly fine is just so painful to think about. I feel that I created a perfect baby but then let her down, killed her in fact, at the last minute. We also know that she died at some point in the 14 hours before I went to the hospital with concern over the lack of movement. I keep running over that morning in my mind thinking how my baby was being starved of oxygen, dying, as I was happily pottering around the house, so impatient to meet my darling girl. How could I not have known she was in trouble? What sort of mother am I? 

My grief for Isobel has intensified so much since finding the results of the post-mortem. I’m not sure if I had improved a little and it’s been a set back to how I was before, or if it’s worse than its ever been -but it feels worse. I’ve cried and cried until I can’t breathe and my head aches. I’ve lost all my motivation and for the first time since Isobel died, I’ve cancelled plans with people due to not feeling like going anywhere (usually I just make myself go regardless of how I’m feeling) and I haven’t been out walking or running since the appointment. Today I’ve cancelled plans with my friend and I’m still in my pjs on the sofa at 3pm. I want my perfect little girl here with me, what is the point of anything without her? 

I’m also so scared for the future. The idea of this happening again if I ever even manage to get pregnant again is too much to contemplate. I could not survive this loss a second time. It seems so unfair to even have a full term stillbirth, never mind to have such an unusual condition that they don’t know the cause of, how to test for it during pregnancy, or how to treat it! It’s like I’ve won the anti-lottery! The consultant at the hospital was so unhelpful, she just said she’d never come across the condition before and I would be treated with aspirin in my next pregnancy. Even a rudimentary Google search reveals that aspirin is not a successful treatment for this condition. Due to the rarity there is very little information available but there is one case study online documenting successful treatment with an anticholesterol drug. However there are more failure than success stories so it all feels very hopeless at the minute. My little flicker of hope that one day Isobel will have a little sibling and that Simon and I will have a baby to care for has been extinguished! 

I know at some point I will move from wallowing mode to action mode. In action mode I will research and become the worlds leading expert on MPFD! I will find a consultant who knows something about something and who will look after me should I ever become pregnant again. In action mode I will have hope that something I can do will actually make a difference. For now though it’s pure wallowing: it’s crying and pjs and ice cream and day time TV and above all missing my baby girl with every part of my mind, body, and soul.