Unfortunately at times, families are having to use general birthing rooms instead of a specialist private room to support their birth journey during the most painful time of their lives. We hope to help create a safe space to allow families to birth in private and make precious memories.

Our Story:

Our names are Lisa and Scott and we are Freddie’s Mummy and Daddy. We lost our beautiful baby boy who was born sleeping on 24th February 2025 at 23+2 weeks.

We will never forget the morning of October 13th when we found out that we were having a baby. With the odds against us, we were both absolutely thrilled and also shocked as we had struggled to conceive naturally. Our referral for IVF had been sent off a few weeks before, so this felt like our little miracle baby.

The first 20 weeks felt like a dream come true, we couldn’t believe our luck.

However our world came crashing down on our 20 week scan. Freddie had a part of his brain missing, the corpus callosum to be exact. The corpus callosum is a bundle of nerve fibres that allows your brain left and right hemispheres to communicate.

We then got sent to a specialist for a second scan, to which he also confirmed the missing corpus callosum. He also couldn’t see every angle of Freddie’s heart due to Freddie resting his left arm across his chest.

He referred us to have a scan the following day for a fetal heart echo. This took longer than expected due to Freddie still being in his most comfortable position. After what felt like a long wait, the consultant told us Freddie had a heart defect which would need surgery potentially as soon as he was born and again in his teenage years.

Arriving back to Southmead Hospital for further tests, some fluid was taken from Lise’s womb to check Freddie’s chromosomes and genetics.

After two and a half weeks of the unknown, our consultant called to tell us the results. Unfortunately Freddie had a very rare condition called CDK13. Less than 100 cases in the UK have been diagnosed with this genetic condition post pregnancy.

Unbelievably, our genetic consultant told us Freddie was the first baby ever to be diagnosed with CDK13 during pregnancy.

CDK13 has significant developmental, intellectual delays with some children who aren’t able to talk. Other symptoms include seizures, feeding problems, speech problems, dysmorphic facial features along with brain & heart abnormalities.

We spoke to three consultants including a genetic consultant, which all confirmed that this particular genetic disorder was severe for Freddie. This was also the day we found out that we were having a little boy.

On the 21st February, we decided to make the dreaded decision to end the pregnancy. It was a choice no parent should ever have to make.

3 days later, Freddie was born at 16:51pm weighing 1.2lbs and in his most comfortable position - resting his left arm across his chest.

Throughout labour, we had a playlist on in the background on repeat. This playlist must have been repeated multiple times, and there was only one song we both liked which we both downloaded in the early stages of labour. Miraculously, when Freddie was born, the exact same song was playing and that song is called Yellow Rose.

In honour of Freddie we are taking on challenges to help other families going through the most heartbreaking time:

🥾2nd August 50km canal walk Sharpness to Gloucester Quays

🚲 April 2026 London to Paris across 3 days

We are completely heartbroken & can’t believe that this has happened. We love and miss Freddie every second of every day. Sleep tight our precious boy. 💛

Thank you for taking time reading our story.