The legacy of our stillbirth – Jess’ story

When our son Leo Phoenix, was stillborn at 37 weeks, we knew that we would go on to try and have another baby. Whilst this can be a challenging decision for some, it was a simple decision for us as we had done IVF due to being a same-sex couple. We had spoken previously about always wanting to give our other two frozen embryos a chance so this feeling didn't change at all when Leo died.

It was because of this that we consented to a full post-mortem with genetic testing. We needed to ask Leo all we could in order for him to help his potential siblings. It is never a nice thing to have to consent to, but I am glad that we did. Whilst there wasn't a conclusive cause for Leo's death, it did give us a few things to focus on in a subsequent pregnancy, and ruled out any potential concerns with using our embryos.

I first fell pregnant five months after Leo died following a round of medicated Frozen Embryo Replacement treatment with one of our two remaining embryos. If I am honest, the initial feelings weren't of joy but of fear and grief. We wanted to become pregnant again but it only served to solidify how cruel the world was for taking Leo away from us. We shouldn't have to be going through these emotions - he should have been at home with us.

A few days after my pregnancy test, I started spotting and I waited nervously for two weeks to be able to confirm what was happening. It was such a struggle to try and hold on to hope and positivity but all the while my body was giving me every reason not to. At six weeks and four days pregnant I miscarried. It was such a heavy blow, it just felt that the world was beyond cruel.

Leo taught us just how much we wanted to parent a living child, and bring them home with us. This was the driver all the time whilst going through fertility treatment again. Losing our second pregnancy, one we termed 'Robin', showed us how much hope we still had for the future. At times it dwindled, but it was still there. Small, yet persistent.

Four months later, following an unmedicated Frozen Embryo Replacement cycle, I fell pregnant for the third time. When I look back on this pregnancy I feel really proud of all that we achieved and did to make sure that we felt as safe and supported as possible. When anyone asks me for advice regarding pregnancy after loss, I always say: “You need to find what helps, and never be afraid of asking for it... and more.”

It was hard. I wouldn't want to give any other impression. There were times during that pregnancy that were particularly challenging for us. My mind could be very dark - I struggled to believe in a positive outcome, constantly waiting for it all to end again. What helped me was recognising the challenges, reflecting and working out what to do better next time.

As Leo was stillborn, monitoring this baby’s movements was a huge factor for me - we took several trips to the Maternity Assessment Unit to be checked over. I quickly learnt how fearful I was of going back there, to the place where we found out that Leo had died. So I decided to contact our bereavement midwife and arrange a tour of the unit. It was so important to create a new visual of the department, the waiting room and the triage rooms. We had the opportunity to talk through a range of scenarios and discuss what I should say whenever I needed to be invited in without query. It helped enormously to know they’d listen to my concerns.

I also learnt to recognise my spiraling anxiety and to act on it earlier and earlier. I got to the point of phoning up in periods of relative calm because I knew I was headed into a period of anxiety that only a CTG monitor could help with. It really helped to make the episodes less exhausting and traumatic.

We were cared for by an extensive team. Alongside our hospital consultant who saw us monthly for scans, we continued to be monitored by the Tommy's Rainbow Clinic in Manchester as well as attended a ‘pregnancy after loss’ antenatal class hosted by the charity Reading Lifeline.

During the second trimester, I started attending the hospital for weekly CTG monitoring which really helped me feel confident and learn how to trust my baby. I know that CTG monitoring was there purely for my own anxiety and it absolutely helped keep it at bay. However at 35 weeks, I was unable to keep control of my anxiety so my consultant took the decision to admit me.

At the time, it felt quite drastic but I always knew there could be a day when I needed the safety of the hospital. We had already discussed as part of my birth plan the triggers that I had with the hospital environment, so a private room was arranged which made the experience so much calmer for me. I was able to have twice daily CTGs to help me sleep, and request more if needed.

One week ahead of our planned induction Eli was born. My consultant bought forward his induction based on his growth patterns starting to show similarities to Leo. This meant that he was born four weeks prematurely, but together we decided it was a balanced risk assessment.

Shortly after Eli was born, he showed signs of being unable to keep his temperature and oxygen levels high enough. Because of this he was quickly taken to the high dependency unit (HDU).

Walking into a dark HDU unit in the middle of the night just after labour to find your son is really scary. The nurses explained things carefully - they seemed so at ease and confident - and really got to know him and his limits. Three days later, he was discharged to the ward with us, with just a bit of jaundice to shake. Again, we were in a private family room, which was exactly what we needed - to be together, in privacy to balance these new emotions and challenges. We were discharged after a week.

Losing Leo and spending the first few days with Eli in hospital really made us cherish our time together and find a balance that worked for us. My wife took six months off using Shared Parental Leave, and it was the best decision. We took advantage of that time for days out, a few holidays, even moving house as well as just getting to know each other, all without the additional stressors of work.

Pregnancy and parenting after loss is challenging, and a whole new set of emotions to learn and balance, in amongst grief and trauma. I feel calmer now just days away from his first birthday, and my anxiety is mostly less volatile, but it’s still there. Learning to balance it in parenting after loss has been a challenge but one that I'm glad to have the chance to explore after losing Leo.

Having both Leo and Eli to love and nurture in their own unique ways is wonderful - our only wish was that they could both be here together.

Jess runs a Twitter account called @TheLegacyofLeo. She hosts conversations about bereavement and baby loss on her page every Tuesday at 8.00pm.

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