I remember begging them for a c-section

Sarah’s son Tristan was stillborn at 38 weeks after symptoms related to lupus anticoagulant disorder affected the placenta. This is Sarah’s account of Tristan’s birth, the post-mortem, coping with grief, and pregnancy after loss.

By Sarah, whose son Tristan was stillborn at 38 weeks

I discovered I was pregnant in July 2012 and what followed seemed very normal. It was the first time I had ever been pregnant and would be my first child.

My mum happens to be a midwife at my local hospital. We agreed that life would be easier if we kept the nana and midwife responsibilities completely separate.

I had normal scans and antenatal appointments. The first trimester I felt the usual lethargy and occasional nausea and then the relief that comes when those symptoms ease in the second trimester.

Sadly when I approached the gestation for viability, 24 weeks, my uncle passed away following a blood clot and subsequent pulmonary embolism. It was a huge shock for us all and part of the coroner's findings was to have blood tests within the family to rule out hereditary conditions. I had my blood test not long after and I was due to see a consultant about my results a few weeks later.

By the time I saw my consultant, I was 28 weeks pregnant. Everything was fine, I was starting to feel a bit sore when I stood up but otherwise every-thing was great. My mum would ask me if the baby was moving every day and I would think, "Of course he is,” while lovingly stroking my bump.

The doctor looked at my results and explained I had a positive result for lupus anticoagulant, explaining that it is not to be confused with lupus and that there are a high amount of false positive tests. He said, to be sure, I needed another test after 12 weeks to see if it was still there. My mum was with me at the time. She had never heard of this syndrome but was satisfied when the doctor said that there was no concern at this stage and that I could take aspirin daily (in a manner that left me without concern and thinking that it was neither here nor there if I took it or not).

In the weeks after, I took aspirin maybe once or twice a week at most when I remembered. I finished work at 34 weeks as I had quite a bit of leave to take and was struggling to walk at all. At 38 weeks, I had an appointment at the day clinic to see what position my baby was in. Everything had suggested head down and partially engaged up until then. The day before my mum had a feel for his head and wasn’t sure which way up he was.

I was in the day clinic getting my scan when the doctor said to us that she thought the machine was playing up as it had no sound. I was taken across the maternity unit towards the sonographers and a midwife asked about my baby's movement. I cheerily said, "He's moving right now.”

I remember lying there and being told ‘How sorry they were wasn’t a fetal heartbeat. I was stunned. It had not entered my head once that this could be what they were checking for and I genuinely thought it was a machine malfunction. The movement I had been feeling turned out to be my baby swaying as I moved but it was not a movement initiated by him.

I wasn’t sure how long it had been since he stopped moving as I hadn't noticed the difference in movement types.

The rest of the day was a blur

The rest of that day was a blur. I remember sitting in a room in the hospital sobbing as midwives I knew (through my mum) came in to see us. My mum came rushing in and the consultant I had seen 10 weeks before came to talk to us.

They took so many vials of blood for all the tests they wanted to do that my arm went grey. They gave me a pill to start the process and I was told to return in two days later. I remember begging them for a section after I realised I still had to give birth. I don't really remember how I got home or what we did aside from cry, particularly when I could hear children playing outside.

We came back two days later and were shown to their bereavement suite called the Snowdrop Suite. It’s a charity funded room with amenities for both parents to stay and to avoid contact with mums and babies elsewhere on the ward. It was a lovely suite but so awful that it had to exist.

They attempted to induce me for over a day before it began to work suddenly and quickly.

My baby boy was born

Ten hours later, at 8.36pm, the night before Good Friday, my baby boy was born. Tristan Sebastian Wilson was 5lb 11oz and a very long, thin baby.

I asked my lovely midwife, Tina, to look at him first as I didn't know what was for the best as we didn't know when he had died. I didn't know what to expect. She brought him to me, to us and we were in love immediately with the perfect little boy that we never had the chance to meet. He was perfect. He looked like a sleeping baby.

I came down with a fever as soon as he was born so needed to stay on the ward two nights but that was far from an issue. I was very upset at first, the night he was born, about the room's temperature as the heating was clearly on at its highest level due to the snow that day which was drying my son's skin and features out making him look worse. After a while, we were brought back to the suite where a midwife took Tristan to bathe and dress him. They gave me a pill to stop my milk.

Over the next 24 hours we frequently had him with us in our suite as we just stared at him. I had held him but found it too much to hold him due to the way he lay in my arms as it was clear he really wasn't alive. We took so many photos of him with his toys in his basket but I'd ask the midwives to take him back to the cold room as it really alarmed me if he got too warm.

We were discharged on the Saturday of an Easter bank holiday weekend and decided to come back the next day to see him once more as he was due to go for his post mortem soon. It was good to be able to come back to see him even though we were discharged and we took the opportunity to record all his features so we could remember the shape of his lips, chin, eyes, ears, fingers and so on.

We started planning the Tristan’s funeral and made it as much about him as we could, carefully selecting music and poetry. We opted to cremate so we could take him home with us, where he should be, and decided that a wicker casket was the most suitable option for him as it looked like the Mose’s basket he was in at the hospital.

In the weeks after his funeral, we booked a quiet holiday away to Crete to help us reflect on everything and distract us from the wait to hear about the reasons why this all had happened. It was an extremely tough time for us both.

Struggling with grief

We struggled with our own grief and also understanding each others grief as it was so different. My husband, Richard, felt the need to be strong for me and thought it was important to encourage me to match this by trying to focus on the future and carry on. I found it hard to see this as grief at all. Ultimately, after pushing our marriage to the very brink, we were able to find a way to be more understanding of each way of grieving and support each other to become stronger as a married couple.

This was particularly important as in the weeks that followed I started to experience symptoms of anxiety and panic attacks. I had never felt these pains before Tristan and four years on I still feel them. One of my first panic attacks was on the plane home. I had a sense of fear that after the worst has happened - losing a baby - other terrible things might happen because of some streak of extremely bad luck.

I decided very soon that I needed to be away from my empty home and distracted from my thoughts. I discovered that I needed to give two months notice to return to work early but thankfully they accommodated me.

Returning to work

My return to work was not as smooth as it should have been. It was coordinated by someone with little consideration of how to make it gentle.

A colleague asked me how the baby was as soon as I walked in the building.

I had a new manager who I was introduced to by phone. He had been vaguely briefed on my situation and greeted me by asking me if I had en-joyed my maternity leave. My former manager had not mentioned my baby had died.

It happened a few times after that - someone would ask, in the middle of the office, "Oh, you're back early. How’s your new baby?” No one had thought to share the news to prevent these situations where I had to explain my baby had died in front of everyone. Obviously, it was incredibly emotive and very difficult.

I have taken the philosophy since to be open and frank about what hap-pened. I have things that trigger my grief and I also don't want people to think that talking about Tristan is a bad thing. It is very important that I get to talk about him so I can keep him in our minds.

I find it works best to tell people up front about what happened so they don't say the wrong thing or ask me something innocently, which catches me off guard. I have had a few new managers and colleagues since and I now explain what happened or ask a manager to explain on my behalf so that the awful questions don't get asked.

My second son and the rainbow clinic

The single biggest thing that helped with my grief was my second son. He was born less than a year after Tristan as we tried for him, successfully, as soon as we had the post mortem results come back to say that Tristan was perfect. The results told us that the placenta was 20% the size it should have been and most of it was calcified and riddled with clots - all symptoms relating to syndromes similar to the lupus anticoagulant disorder I had tested positive for during pregnancy. This meant that the subsequent pregnancy, would be "unchartered territory" for my new doctor Dr Alex Heazell at the Tommy's Rainbow Clinic in Manchester, a clinic for bereaved mums like me.

My mum came across Alex's name after doing some research into clinics that specialise in blood issues in pregnancy and his name cropped up. We met him before we fell pregnant again and his Rainbow Clinic was just starting out. I didn't want to go near my previous consultant as he could have offered extra monitoring to me but didn't and Alex assured me that they would monitor me, my baby and his placenta very closely.

We saw Alex about once a month until my third trimester when it became fortnightly, mostly for my peace of mind. I refused to see a midwife for antenatal appointments as I had lost faith in the tape measure and listening in for a heartbeat.

My pregnancy was very hard on me and my husband, who was showing signs of stress. I was finding it difficult to sit or stand with SPD after 20 weeks so spent most of the pregnancy at home due to the agony. I had essentially been pregnant for 18 months with a break of a couple of months.

My son's growth began to slow and my monitoring increased until I was admitted to the ward in the run up to his birth. I was granted an elective section on the grounds of anxiety and Fabian Alexander Wilson was born at 37+4 weeks weighing 5lb 15.

He lifted us up so much, and still does. It felt like a miracle that he had made it. He was a small baby and was skin and bones when he was born. I was also told by the surgeon that I had a bicornate uterus, something that could have an impact on what happened.

A couple of years later I was pregnant again with their sister, who was born at 36 weeks after a very similar pattern of slowing growth late in the third trimester. After a scan Alex decided to bring her delivery forward as there wasn't any amniotic fluid, a sure sign of something amiss.

In both pregnancies, the anxiety was at a level most probably cannot even begin to imagine. Being pregnant is such a triumph but such a delicate state of being. Every day you would check for bleeding and expect it to be over. Every time the scans began, the pause before you hear you baby's heartbeat you are convinced it just doesn't exist and they have gone again. You worry every moment of those pregnancies.

It feels like being in utero is a death sentence. I struggled to see any merit in prolonging the pregnancy once my babies could be born with a chance of life.

No one understands. You have a people magnet protruding out in front of you all the time and again and again you’re asked, "Aww is it your first?" You try to stop further questions with a curt "No" but then the next one, "So how old is your other child?" So then you have to explain to a stranger something so intimate and heavy.

Even when I talked to family or friends, they said, "Oh it won't happen this time. They are taking proper care of you now,” dismissing my concern and anxiety. Then when your living child is born they seem to forget all about your first baby and talk about your "first Christmas as a mummy" because "the last time didn't count.”

Our second and third baby are not replacements for Tristan. They have helped us as a family to heal but we are still grieving and broken, with vis-ible cracks. Tristan would have turned four this year and the wound opens again as new things to grieve come to light. We would be preparing for Tristan to begin school this year. Instead we’re discussing how to tell his three-year-old brother that his older brother passed away as a baby, as del-icately and appropriately as possible.