Cytomegalovirus (CMV) is a common virus that more than half of women will have at some point in their lives.
However, if you happen to get it during pregnancy, it could have devastating and even deadly consequences for your unborn baby.
This is exactly what happened to Katlyn O’Rourke. Katlyn and her partner, Mark, were forced to say goodbye to their little boy, Wyatt, at just 21 weeks gestation after discovering he had contracted CMV.
Like many of us, Katlyn didn’t even know what CMV was, let alone that she had it. She shares her story with Mum Central to raise awareness of CMV and to demonstrate the importance of having a screening done in early pregnancy, even if you don’t have any symptoms.
‘We could tell something wasn’t right’
Katlyn, Mark and Katlyn’s five-year-old stepdaughter were over the moon to discover they were expecting. After a smooth first trimester, the threesome ventured to their 20-week 3D scan to get a closer look at the newest family member – a little boy.
“Halfway through the scan we could tell something wasn’t right,” Katlyn tells Mum Central. “The sonographer informed us that he had fluid in and around his bowels and his measurements were smaller than expected.”
Katlyn booked in to see a midwife the next day. She was sent an urgent referral to the hospital, followed by a follow-up ultrasound and an appointment with a specialist.
The specialist called in the head of the department and we knew something was seriously not right. They asked if I remembered being sick with flu-like symptoms at all during the pregnancy, which I didn’t.”
The follow-up ultrasound showed Katlyn’s bubba had fluid in and around his bowels, a small hole in his heart and a twisted leg and foot. Amnio and blood tests confirmed what Katlyn was most afraid of – something was terribly wrong. More tests concluded that her baby had stopped growing and had significant brain damage.
They said CMV. I had no idea what they were talking about as I had never heard of it. Once they explained what it was and that the amnio showed the count was in the millions for CMV, I was a sobbing mess and so angry as to why I had never heard of this.”
‘The toughest and most heartbreaking decision of our lives’
Katlyn and Mark were told that they would lose their son, either through miscarriage, stillbirth or after a few minutes/hours old.
We had to make the toughest and most heartbreaking decision of our lives. At 21 weeks and 1 day we terminated and delivered our beautiful baby boy Wyatt Douglas James. We chose this name as it means ‘Strong in War’. So small and perfect but never meant to walk this earth.”
Through the heartbreak, Katlyn admits she’s left with a lot of anger over how this could happen.
I’m absolutely devastated and angry that I was never informed about something that we are told is such a common thing.”
CMV pregnancy testing in Australia
Since losing Wyatt, Katlyn and Mark have been blessed with their rainbow baby boy, Kaiden Gavin, who was born 20th June 2019. However, the couple will always keep their little Wyatt close to their hearts. They are hoping their story will inspire more women to research CMV and lead to routine screening in early pregnancy.
In Australia, pregnant mums are not routinely checked to see if they have cytomegalovirus. It’s only if you are sick or if the ultrasound reveals an abnormality that testing will take place. If you work with young children, you may also be tested.
The effects of CMV
According to Melbourne obstetrician Dr Joseph Sgroi, CMV is actually incredibly common. Symptoms can include fever and loss of energy but often there are no symptoms at all. Cytomegalovirus is transmitted via saliva, often from young children. In those with a healthy immune system, CMV isn’t really a cause for concern except in pregnancy.
“Congenital CMV can cause serious health problems, including vision and hearing loss, a small head and brain, seizures as well as growth and learning problems,” Dr Joe explains. In rare cases, CMV can cause cerebral palsy, developmental delay, intellectual disability and, in cases like Wyatt, death.
Studies in Australia have shown that out of 1,000 live births, about six newborns will have congenital CMV infection and one or two of those six babies (about 1 in 1000 infants overall) will have permanent disabilities of varying degrees.
As there is no mandatory early screening, the best defence against CMV for pregnant mums is to avoid saliva swapping. No sharing food or drinks, no sharing toothbrushes and no putting your child’s dummy in your mouth. It’s even suggested to avoid kissing your kids on the lips if you are pregnant.
“Saliva is a common way to contract a disease and avoiding it is best, especially during pregnancy,” Dr Joe tells Mum Central.
Pregnancy can be a terrifying time, especially when there are viruses out there that can hurt your baby. We thank Katlyn for sharing her story with Mum Central and raising awareness of the dangers of CMV. For more information please visit www.cmv.org.au.