Our baby died during lockdown – it affected our grief in so many ways

Jess Watson was seven months pregnant when the UK’s lockdown was announced.

Months earlier she had been told her baby had a 50/50 chance of survival having being diagnosed with a rare condition known as CDH.

Here, she reveals how she and husband James dealt with the loss of their son Leo after she gave birth – and the effect lockdown had on their grief.

I was almost 19 weeks pregnant when we had our first anomaly scan on 23 December.

We were having a boy.

Leo was diagnosed with congenital diaphragmatic hernia, or CDH
Image: Leo was diagnosed with congenital diaphragmatic hernia, or CDH

He was a very active baby so we had to return after Christmas because he wasn’t in the right position for his heart and stomach to be seen.

Christmas and New Year passed in a blur of celebrations and on 15 January we returned for our repeat ultrasound.

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Within a few minutes the sonographer went quiet.

There was something wrong. The baby’s heart and stomach weren’t where they should be.

A lovely senior midwife came to speak with us and she called it congenital diaphragmatic hernia, or CDH.

Having had an almost textbook pregnancy first time around, we were in shock.

A few days later the fetal medicine consultant confirmed the CDH diagnosis.

Jess and James Watson with Leo
Image: Leo was born at almost 39 weeks in Bristol

We were referred to the regional fetal medicine unit for the South West in Bristol for a second opinion.

They confirmed the hernia was large, right-sided with liver and bowel in the chest, which put us on the more severe side of the spectrum.

We were offered further genetic testing to look for any other anomalies that might have caused or be linked to the CDH.

The results came back clear so we decided to give our baby boy every chance to fight.

I was around 32 weeks pregnant when lockdown was announced. It meant that at all the remaining appointments, the discussions around induction of labour and delivery had to be done without James.

Leo was born at almost 39 weeks by planned c-section in Bristol where the specialist neonatal team could care for him.

We were able to visit him a few hours after birth once he had been put on a ventilator. He was finally here.

But by the next morning Leo had started to deteriorate.

He was already on the maximum level of support they could give him.

The day was spent with Leo whilst having difficult conversations about his care.

By early evening we knew there was nothing left to do but make sure he wasn’t in any pain.

Jess Watson pictured with his son Leo
Image: Leo’s parents cast his hand and foot in clay

The nurses and doctors were incredible and made our last hours with him truly memorable.

We cast his hand and foot in clay, took so many pictures and told him all about his sister and the rest of his family.

We just couldn’t believe we were saying goodbye so soon without any of our family and friends around us.

Lockdown affected our grief in so many ways.

We had to register Leo’s death within five days, over the phone, but we weren’t able to register his birth until register offices opened again – almost two months later.

There were times when James felt isolated without face-to-face contact and direct support but the bereavement teams at both our local and regional hospitals, as well as CDH UK, have been able to help – albeit at a distance.

To learn more about CDH, visit https://cdhuk.org.uk/