real life

Hannah contracted a common virus in pregnancy. The impact was devastating.

Aussie couple Hannah and Dave are going through something no parent should ever have to endure. 

Recently, their three-month-old son Albie was diagnosed with a rare, terminal brain condition called Lissencephaly. This was a result of contracting congenital cytomegalovirus (CMV) in utero, which wasn't discovered until after he was born. 

It's unclear how much time he has left.

"I had a totally low-risk pregnancy and birth, but the doctors were worried about him pretty soon after delivery," Hannah tells Mamamia.

"He was transferred to hospital as there were a few complications. He had quite a small head at birth, so with that in mind as well they did a CMV screen, and that's when it came back positive for congenital CMV. Our whole world was just flipped upside down in an instant."

Watch one mother's CMV story. Post continues below.

CMV is a member of the herpes virus family, and it's relatively harmless if contracted typically. For people with a healthy immune system, CMV is likely to cause no more than a temporary fever or headache.


But if someone who is pregnant contracts CMV, the risks become higher - and the consequences can be devastating.

Following the positive test for congenital CMV, doctors performed additional tests, and the MRI led to the diagnosis of Lissencephaly.

This diagnosis will severely shorten Albie's life and affect the development of his brain, which leads to many complications developmentally, including cerebral palsy and distress. Hannah explains that Albie is now deaf in his left ear, and requires round-the-clock care including tube feeds and regular medications. His condition is progressive so his needs will only continue to increase.

It's been a devastating time for Hannah and Dave, who also have a two-year-old girl, Beatrix.

"I'm a midwife myself, so I was obviously aware of CMV but also knew we never screen for it because the risk associated is low and monitoring is complicated. Unknowingly in my first trimester I had contracted CMV somehow, and it would have had to have been in my first trimester for it to have such significant impacts on Albie's brain," says Hannah.

Ultimately, the road ahead is filled with challenges, both emotionally and financially. The family's loved ones have started a GoFundMe for Albie to help with medical bills. Hannah and Dave have also made an application to NDIS for support, but this is yet to be processed.

Dr Rebecca Goadby is a General Practitioner. Speaking with Mamamia, she explains that CMV is a common virus, with estimations that up to half the population have been exposed to the virus by young adulthood. It's spread through close contact with blood, urine, and saliva of those infected with the virus, as well as through close sexual contact.


"CMV can be passed from a mother to her unborn child as a result of infection or reactivation of the virus during pregnancy — this is known as congenital CMV. The risk of congenital CMV is highest when CMV is contracted by the mother as a new infection during the first half of pregnancy," Dr Goadby notes.

This infection can then lead to an increased risk of a baby being born with a disability including deafness, reduced vision and intellectual disability.

"Thankfully congenital CMV is rare. It's also important to remember that even if a woman does contract CMV during pregnancy, the risk of disability in their unborn baby is low. Your GP will discuss the risk of CMV with you early in your pregnancy, including risk reduction strategies such as hygiene precautions. These precautions include regular handwashing after contact with a child's saliva or urine, no sharing food or utensils with young children and not putting a child's dummy in your mouth."

Baby Albie. Image: Supplied. 


Dr Gino Pecoraro is an obstetrician and gynaecologist.

"CMV is a virus like the millions of other ones, though if you get it during pregnancy and particularly when the baby's organs are being formed, it can impact how to the baby develops," he explains.

"20 years ago there used to be screenings for CMV, but the problem is that it's a virus that can become reactivated. A lot of places don't test for it anymore. It's really difficult to interpret the data, and there's nothing we can do as we don't have any antiviral drugs to treat CMV at the moment that I'm aware of and we don't have an immunisation for it."

Dr Pecoraro notes there are tests and checks of how a baby's organs are forming during the 18 to 20 week-scan, and a lot of people now get growth scans at 36 weeks. For expecting parents who feel any anxiety or concern about their unborn baby's health or the risks of CMV, the best thing they can do is speak to your health professional.


"Checks up are great for peace of mind and to make sure the baby is doing well. This is why it's important for the Federal Government to put more funding into women's health generally, but pregnancy specifically, as not all ultrasound scans are the same."

Right now, Hannah says they're taking things day by day.

"The most upsetting thing at the moment is that Albie is in distress," she notes.

Doctors explained that Albie's brain is organised in a different way and so he can't filter external stimuli like most babies can. This means he's quite distressed all the time when he's awake. 

"We're just a normal family, and this could happen to anyone," says Hannah.

"Unfortunately, it's happened to us. In my work as a midwife I've helped so many women and families. So as hard as it is to ask for help, now it's our turn to ask for support. We just want to keep him as comfortable as we can for the time that we have him."

If you would like to support baby Albie and his family, you can do so via their GoFundMe — donate here

For more information on CMV, visit Health Direct.

Feature Image: Supplied.