A FAMILY is today wearing light blue to honour their son on a national awareness day.

Today (Monday) is National Trisomy 18 Awareness Day and to mark the day, Hatch Warren residents Jessica and Adam Roach have written about their experience of the condition with their son Hector.

This, in their own words, is their story:

Firstly, I would like to introduce us as a family. We are Jessica, Adam, Hugo and Hector* and we live in Lapin Lane, Basingstoke.

On June 4, 2018, we were told that there were abnormalities in our screening results from our 13 week scan for baby no. 2. We were at an increased risk of having a baby with either Edward’s (Trisomy 18) or Patau’s (Trisomy 13) Syndrome.

Our odds were one in 76. The accountant in me worked this out to be a 1.32 per cent chance that we could be affected.

Good odds if you’re a gambler.

However, a further blood test known as Harmony revealed that the chance was now greater than 99 per cent for Edwards Syndrome (T18). On this basis we were offered an amniocentesis / CVS and this sadly confirmed our worst fears on June 15.

We were offered a termination as the medical profession deem this baby incompatible with life. That’s certainly not what we saw on the ultrasound, our baby was alive and kicking and so where there was life, there was hope for us.

I’d researched nothing else since June 4 and I began to join support groups and was introduced to families that had children thriving. They did not look incompatible with anything, they were compatible with love. The joy they brought to their families couldn’t be hidden or masked and so we knew we would see this through to whatever conclusion and we’d let our baby show us the way.

Throughout the rest of the pregnancy, we were monitored almost every week and he was defying all the odds with minimal symptoms of the syndrome. He had issues with his heart that we learnt from a later scan and so we were referred to Fetal Medicine at Princess Anne Hospital, Southampton where we were told that his heart could be fixed.

More hope arose within us as a family.

Fast forward to September 26, where we received the devastating news that the placenta was failing our little boy. I was 28 weeks pregnant at this point and knew that this was too early for his condition.

We elected for a C-section and he was expected to be delivered within the next two weeks.

So, on Tuesday, 2 October, 2018, after being monitored for most of the afternoon, the trace on our little boy’s heart rose alarm bells due to reduced movements and I had to be scanned by our consultant at Southampton.

From the scan we could see that there was reverse flow from the placenta and his heart was having to work much harder than before. The decision was made to have the C-section that very afternoon if we were to have any chance of meeting him alive.

So, at 18.10 our little boy Hector Bertie was born thanks to our amazing consultant.

The neonatal team assisted his breathing by giving him oxygen and inflating his lungs but he was struggling to do it by himself. He managed a little breath and an arm stretch but it was clear that he was not going to make it and so my husband brought him to me wrapped in a towel so we could spend the last precious moments with our son in our arms.

As soon as he laid on me, he opened his eyes and I saw our baby boy for the very first time, he even managed to poo on me and then poked out his tongue. We did skin-to-skin and he sadly passed away in my arms at 21.14.

Basingstoke Gazette:

We are sharing our story today to raise awareness and we wear light blue for all the Trisomy 18 angels and fighters.

If you’ve managed to read this far then we thank you from the bottom of our very broken hearts.

You can follow more of our story on the following:

Instagram: honouring_hector

Twitter: @honouring_hector

What is Trisomy 18 ?

It is also commonly known as Edwards Syndrome and is a genetic disorder caused by the presence of all or part of an extra 18th chromosome.

One in 5,000 babies have a diagnosis, 90-95 per cent of babies born in the UK will not survive to term and only five per cent will get to their first birthdays. 80 per cent of T18 babies are female and male T18 babies have a higher mortality rate.

There are three types of T18 - full, partial or mosaic. This is normally confirmed via an Amnio centiscis / CVS durning pregnancy or blood tests following birth.

March as a whole is also Trisomy Awareness Month.