Support for Parents and Families

Finding out that your child has CMV can turn your whole world upside down. Most people have never even heard of CMV, let alone considered how a diagnosis could impact their family. If you are dealing with a new diagnosis, we are here for you. We understand what a confusing and scary experience it can be trying to navigate the medical system and determine the best course of action for your loved one. Know that there is an amazing community of CMV parents in Canada and our organization will ensure you find all of the resources and supports that you need.

If you don’t know where to start, start here. We have outlined all of the basic information and questions that parents want to know below. If you have any questions at any time, please do not hesitate to reach out to us at: info@cmvcanada.com  

What is the Prognosis For a Baby Affected by cCMV?

Babies affected by CMV have a wide range of lifelong effects. The majority of babies born with cCMV (4 out of 5) will be absolutely fine and go on to develop like any other kid. Some babies have permanent effects that can range anywhere from hearing loss to cerebral palsy.

Without treatment, children with hearing loss will likely go on to continue to lose their hearing. It is very important for your child’s development to attend regular audiological exams.

Facing the unknown is hard. It helps to put things into perspective – take small steps and control what you can when it feels like everything else is uncontrollable.

Why Didn’t My Doctor or Midwife Find This Sooner?

Some symptomatic babies can be diagnosed while in utero, but most will not. Symptoms vary and quite often there simply aren’t any. In other cases, symptoms are very mild and are easily missed. In fact, 80% of symptomatic babies go undiagnosed.

Knowledge about cCMV amongst the general population is very low and 91% of mothers have never heard of the virus. CMV Canada is an actively working with the medical community trying to raise awareness with frontline practitioners and the public to help eradicate CMV.

Treatment

Newborns require treatment when they display signs and symptoms of CMV infection. The type of treatment depends on the signs and symptoms and their severity.

The most common treatment is antiviral medication, which can slow the reproduction of the virus. Researchers are studying new medications and vaccines to treat and prevent CMV. If your newborn has tested positive for CMV, talk to your doctor about antiviral medications.

Is Treatment Safe?

Antiviral treatment is generally well tolerated. The most severe side effect is when the baby’s white blood cell count gets too low for them to fight off bacterial infection. Regular blood tests are required to help ensure their they stay within a healthy range. There have been no cases of infertility or cancers as a result of treatment.

Parent Hacks For Administering Medication:

  • Put tape or clear nail polish on the outside of the syringe so that the numbers don’t wear off so quickly.
  • Getting baby to take the medicine:Put baby on his/her back.
  • Put syringe into the cheek at the back of the mouth and dispense slowly.
  • Have a paper towel ready.
  • Make sure to monitor your baby’s weight. If they have a growth, spurt see your infectious disease doctor to get the dosage adjusted.
  • Don’t forget – you and your baby are learning how to do this! It takes practice and you will get there.
  • Canadian regulations for travelling with medication

Next Steps

If you suspect your baby has been infected with CMV, ask your doctor about CMV testing.

If your baby has been diagnosed with CMV, ask your doctor about antiviral treatment.

To join our parent registry and newsletter to stay up to date on all things CMV in Canada, sign up below:

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Family Stories

If you are dealing with CMV, you are not alone. Click the here to read about other Canadian families who have been impacted and learn about their experiences.

Resources

There is so much to learn when it comes to CMV and all of the conditions associated with it. It can be absolutely overwhelming. Fortunately, here in Canada we have many incredible organizations dedicated to helping parents. Below, you can find a few of these organizations and resources that they have developed to support you and your family.