Truncus Arteriosus: James’ Story

Laura received the devastating news that her baby had a serious heart condition, Truncus Arteriosus, at her 20 week scan. Here she shares James’ story:

When I was pregnant with James, we went for all the normal scans but at the 20 week scan, the sonographer spent a long time trying to get our boy’s heart images.

She said she needed a more experienced colleague to try and get the measurements, so we went to a different department.

We could tell something was wrong.

When we got in the other room, it didn’t take long for the other sonographer to say, ‘There’s something wrong with your baby’s heart’.

In that moment, I broke down and our world changed. We went into the ‘bad news’ room and spoke to a specialised midwife on the phone whilst still supported by the sonographer.

The scan was on a Friday, but we had to wait until the following Monday to be seen at Leeds General Infirmary. The scan at LGI was so emotional.

After the scan, the fetal medicine team gave us all our options and what the possible outcomes could be. Our beautiful boy had truncus arteriosus.

He decided to arrive early – at 34 weeks. He was too small for his main surgery, so needed to stay in hospital and grow. He needed support from the moment he was born and at ten days old he had emergency, open heart surgery to buy him some time to grow.

At the end of March 2013, James had his repair done, after being in hospital all his life. It all went to plan and we could think about going home. Our local hospital trained us on how to do NG feeds and get our community support in place.

He is now doing amazingly ! We have had a very bumpy three years and we know there are more bumps to come. James is so strong and brave. He’s had ten general anaesthetics so far, a PEG, severe glue ear (and possible sensorineural hearing loss), an issue with his left eye, small jaw (making him very hard to intubate), narrowing in his throat, unsafe swallow, non verbal, vocal and physcial tics and possible seizures …….. oh and his heart defect!

But, oh my gosh, he is the most content, funny and happy little boy who is looking forward to going to school in September.

Find out more about truncus arteriosus here.​​​