I lost my son to Cytomegalovirus and now I'm raising awareness to this unknown virus

Kristina Duncan of Witherwack gave birth to her son John Thomas (JT) in 2011, who was only alive for a matter of weeks. She was diagnosed with Cytomegalovirus (CMV) after 32 weeks of pregnancy.

CMV is a common virus which is usually harmless, although it can cause problems for babies and people with a weakened immune system.

When a baby is born with a CMV infection it is known as congenital CMV. This is what happened to Kristina and JT.

“I had my son at 38 weeks and two days” she explains.

“His liver wasn’t working so it was actually poisoning him and his blood couldn’t clot. He had scars on his brain so he couldn’t control his temperature.

With the extent of the brain damage unknown, Kristina and her partner saw JT enter Palliative care where his stomach stopped working.

“All because of this virus” adds Kristina. “He had three blood tests a day.

“He hadn’t slept in 24 hours and was in so much pain they needed to give him morphine. Every painkiller they were giving him was having no impact and he passed away at 19 days old.”

CMV remains relatively unknown within the general population, although charity CMV Action describes it as “one of the leading causes of hearing loss in children.”

It is thought 25% of all child hearing loss is caused by the virus, and it is this lack of knowledge which Kristina hopes to change.

“This virus is responsible for miscarriages and cerebral palsy, so for people to not be aware of it and have such little knowledge of it. It’s scary” she adds.

“I had social workers who said I had killed my son because they weren’t aware of the virus so I needed to educate them.

“I shouldn’t have to do that.

“I got a fire within me to get the work out and I need people to be aware of it, and for JT’s story to be told.”

Since the passing of JT, Kristina has been spreading the word through media appearances and day to day conversations with mothers and mothers to-be.

Her goals match those of CMV action, who are looking to raise awareness of the virus with risk reduction advice given to pregnant women as well as targeted screening for CMV in children who fail a newborn hearing test.

The charity is also calling on teams to develop a vaccine to end CMV. It is estimated ten babies per day are born with the virus.

Click here to find out about our email newsletters, delivering the headlines for free

“They are absolutely amazing” praised Kristina, speaking about the charity, but her story has left her hurt.

“It’s had a real impact on me” she admits.

“I’m just trying to get as much out there to get as much support [to fight CMV] as possible.

“There are literally thousands of people going through this every year.”

More information on CMV can be found through the CMV Action website.

Have you got a story you want to share with our readers? You can now send it to us online via YourWorld at https://www.yourworld.net/submit/ It's free to use and, once checked, your story will appear on our website and, space allowing, in our newspapers.