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In mid November Sophie and I went for a 35 week scan to see how our second child was getting on. The scan picked up a mild anomaly, the baby was showing a slightly enlarged posterior ventricle, it’s not necessarily a problem on its own but it was enough for us to be referred to St. Thomas’ Hospital for an MRI scan.

The following day we were called to see our consultant at Homerton Hospital who told us that our baby had some serious issues. The baby’s
brain had not developed as it should, we were told that she had a number of serious brain abnormalities including lissencephaly and subcortical band heretopia. These two serious issues were coupled with a number of other serious problems in the brain development and we were told that our daughter had no prospect of a good quality of life.

Babies that are born with this highly rare condition often do not survive beyond a couple of years (if they survive the birth), their brain development never progresses beyond that of a normal three month old and the baby will suffer from fits and seizures that do not respond to current medical practices. Some babies are never able to properly feed, many are born blind or deaf and some get to a stage where they are having so many fits and seizures that they are unable to sleep.

Our doctor advised us that the best option for the baby was for the pregnancy to be terminated. For this to happen at this late stage in
the pregnancy you need at least two doctors to agree, and advise this course of action. Two doctors in Homerton advised us this would be the best way forward, as did the MRI and brain expert from St. Thomas’. This is not a decision we took lightly but we decided that we should take the advice from our doctors.

On the Friday morning we were back in the hospital where our doctor gave the umbilical cord and injection that would end our baby’s life peacefully and painlessly. The three days running up to this moment were excruciating, full of tears, anxiety and a lot of support from our close friends. After the injection our doctor hugged both me and Sophie, with tears in her eyes, it was clearly a very difficult moment for her as well.

Following this we were sent to the delivery suite of Homerton Hospital, where Sophie was induced and laboured until 10:27 am on Saturday morning 2nd December when our baby was born. The room had all the usual noises of a delivery, beeps from medical machinery, conversations between doctors and nurses but was eerily devoid of the first cry of the baby that announces every new healthy baby’s life. Our midwife took our baby away, washed her and dressed her, then brought her back for us to meet her. She was beautiful, she reminded us of our son Albert when he was born. We got to spend the rest of Saturday with her until around 8pm when she was taken away to have her post-mortem.

The experience of having our baby next to us was desperately sad but also a strangely beautiful moment. When we were first told about what we should do earlier in the week, we wandered if we would even want to, or be able to cope with seeing her. In the end though, the few hours we had sharing our room in the hospital were really quite wonderful, and I will remember fondly for the rest of my life. When she was lying in the cot, with her eyes closed, dressed in normal baby clothes, she looked so peaceful and content.

Every midwife, doctor, sonographer and member of staff at Homerton helped us through this week. We must have been hugged by half the staff body of Homerton delivery suite, and I cannot overstate how brilliant they were with Sophie and myself through the most challenging week of our lives.

I feel really privileged to have had my daughter, even if the circumstances were so fraught. My few moments with her next to me and Sophie, and the 8 ½ months she spent with us growing and kicking, maybe hearing the conversations between me, Sophie and Albert and the feint sound of the music we were listening to, will always be with me.

We did give her a name, Nell Bailey. She was 3.5kg when she was born and 49.5 cm long.

I wanted to share this story with you all, and I do not mind you sharing it further. Sophie and I are very lucky, we are surround by people who we love, friends, family and our son Albert. We are also incredibly lucky to live in a country where we have exceptional medical support free of charge available through the NHS. 

The reason I am fundraising for Maternity Worldwide is that they work to give people in less fortunate circumstances access to amazing medical care. Their vision is to work towards a world in which all women and their babies can access safe and appropriate childbirth regardless of where they live. Aiming to help reduce the number of women dying or injured in childbirth. You can find out more about them here: https://www.maternityworldwide.org/

Sophie is fundraising for Homerton Hope, a charity that supports the work of Homerton Hospital where we received such amazing care: https://www.justgiving.com/fundraising/fornell 

My sister Julia is fundraising for SANDS a charity supporting parents who have stillborn children by running the London Marathon: https://www.justgiving.com/fundraising/running4nell 

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