Leo’s story.

On April 29th, the routine 20 week abnormalities scan changed our lives forever. We found out that our baby, Leo, was incredibly poorly and was unlikely to make it to full term. 

We were given the options of continuing the pregnancy, going for further testing or a medical termination. This is not a decision that you ever think you are going to be faced with. Leo had several abnormalities affecting his health and we were informed that if he survived to full term, he would have severe mental and physical disabilities which would mean that he would most likely require 24 hour care for his short life. Once the shock had begun to wear off, we realised just how bad Leo’s situation was. The consultant said that there was medical grounds to terminate the pregnancy at any point because of how ‘severe’ the abnormalities were. 

We decided to have a medical termination. This is not something that’s easy to decide and it’s also something that is not easy to share. Some people reading this may have done the same thing, others may have not. Despite us choosing the outcome, we would have never chosen to lose our baby. We just wanted Leo to go through as little suffering as possible. This was our way of making sure he was born at peace and not in pain, fighting for his life.

On May 19th, Leo’s heart was stopped and on May 22nd, Leo was born. The most perfect baby boy. 

Leo will never be forgotten and we will make sure that his legacy lives on by sharing his story to raise awareness of baby loss. 

Unfortunately, we still don’t know exactly why Leo was so poorly. We were hoping for some closure in his results, however they were inconclusive. What we do know is that Leo did not have a syndrome. The consultants had previously thought that Leo had Edward’s syndrome (this is screened for at 12 weeks), but he didn’t. They found a deletion in Leo’s genes, which is the reason for the abnormalities, however it doesn’t have a name and, at present, we don’t know why it happened.

Our next step is parental genetic testing, a long waiting game. It could still be random, we are hopeful that it is. However it could also be from myself or Leo’s father. 

This is why we have chosen to raise money for Antenatal Choices and Results (ARC) in Leo’s name. 

ARC helps both parents and professionals through antenatal screening and is the only national charity helping through antenatal screening and it’s consequences. We gained a lot of helpful information to help us understand the testing and the results were we left with. 

‘Around 800,000 women in the UK become pregnant each year. More than 40,000 will be told there is a chance their baby has a genetic or structural condition. Naturally, this can cause a great deal of anxiety and uncertainty. Most parents will ultimately be reassured the pregnancy is progressing as expected. Sadly, some will receive the devastating news that their baby has a serious, sometimes lethal condition or might be told that the outlook is very uncertain.

ARC offers non-directive information and support to parents before, during and after antenatal screening; when they are told their baby has an anomaly; when they are making difficult decisions about continuing with or ending a pregnancy, and when they are coping with complex and painful issues after making a decision, including bereavement.’

If you took the time to read this, I want to say thank you. Please know that talking about it does not mean it will happen to you. Equally, not talking about it does not it won’t. 

Baby loss is a subject that people do not want to talk about, understandably, it is incredibly sad. But it is not catching. It cannot be passed from one mother to another. The more we talk about this taboo subject, the more parents will feel supported if this ever happens to them. I am lucky that I have an incredible support system, but unfortunately that is not the case for every bereaved mother.

1 in 4 pregnancies end in loss. This could be you, your partner, your sister, mother, aunt, friend or colleague. Since opening up about Leo, I have found out about several babies who were sadly stillborn. I hope that talking has helped them, as it has helped me. 

Thank you. 

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