pregnancy

'At 15 weeks pregnant, I was sick. It would have life-long implications for my son.'

It started at a routine check at 26 weeks.

After our baby was measured small, we were sent up to the hospital for monitoring. Two weeks later, follow up scans picked up an abnormality in our baby’s brain.

It took scans, tests, screens and an MRI for us to find ourselves waiting in the family medicine unit. When we were called in to see the doctor, we were told our baby had Neuronal Migration Disorder. His brain hadn’t developed properly. The phrases ‘not compatible with life’ and ‘termination’ were used. At 31 weeks, this was not something we could comprehend, process or reconcile.

Over the next few weeks, the tests, scans and screens painted a bleak picture, so when I went into labour at 37 weeks, we were heading to the hospital to say our first hello and our final goodbye to our precious baby boy.

At 2:30pm on Friday, 28 March 2014, Christopher Phillip was born. The next three weeks were a whirlwind of intense treatments, scans, screens, tests, monitoring and observation as the medical world tried to understand our beautiful baby. On day two we were given the overarching diagnosis of Congenital Cytomegalovirus, or CMV.

Much to everyone’s surprise, most of all ours, after only 19 days in the neonatal intensive care unit, we were able to take our boy home.

Over the next 12-18 months, amidst a myriad of appointments, assessments, consultations and meetings, Christopher was given the following diagnoses:

  • Microcephaly
  • Severe Global Developmental Delays
  • Cerebral Palsy
  • Epilepsy
  • Cortical Vision Impairment
  • Unilateral Hearing Loss
  • Residual Constipation
  • Hip Dysplasia

He is PEG tube fed, receives regular Botox treatments and is on medications to manage and control his tone, pain and seizures. He has had his hips relocated and has just recovered from his latest surgery to help us regulate his bowel movements to ensure he stays comfortable. He attends a specialist school and weekly therapy. He is non-verbal and non-mobile and relies on us for absolutely everything.

what is CMV
Image: Supplied.

As it turns out, the week I had off work at 15 weeks wasn’t just from being tired and run down from travelling, work and growing a human. I had contracted CMV.

Cytomegalovirus (CMV) is the most common infectious cause of disabilities in newborn babies. Each year, 2000 babies are born in Australia with Congenital CMV. Of these, 400 will experience long term effects. That’s 1 to 2 children born with disabilities from Congenital Cytomegalovirus every day in Australia alone.

It causes deafness, blindness, seizures, global developmental delay, dyspraxia, cerebral palsy, miscarriage, stillbirth, intellectual disability, processing issues, feeding problems and death.

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Until a successful vaccine is developed, being aware of the virus and the simple ways to minimise risk of contracting it will help to significantly reduce the number of babies born with congenital CMV.

Pregnant women are recommended to take steps to reduce their risk of exposure to CMV and so reduce the risk of their developing baby becoming infected.

  • Wash hands often with soap and running water for at least 15 seconds and dry them thoroughly. This should be done especially after close contact with young children, changing nappies, blowing noses, feeding a young child, and handling children’s toys, dummies/soothers.
  • Do not share food, drinks, eating utensils or toothbrushes with young children.
  • Avoid contact with saliva when kissing a child.
  • Carefully dispose of nappies, used wipes and tissues.
  • Use simple detergent and water to clean toys, countertops and other surfaces that come into contact with children’s urine, mucous or saliva.

Child care workers who are pregnant or considering pregnancy should pay particular attention to good hand hygiene, especially after changing nappies or assisting with blowing noses or toileting.

Tom and I have had to have some incredibly difficult conversations about our boy - conversations no parent should have to entertain at any point of their child’s life. Spreading this message means that less families will have those same conversations.

Knowing that there is a simple way to reduce the risk of CMV is frustrating, infuriating and incredibly unfair. When we are pregnant we are in contact with so many medical professionals - doctors, nurses, midwives. Not one of them mentioned CMV.

What is CMV
"Tom and I have had to have some incredibly difficult conversations about our boy - conversations no parent should have to entertain at any point of their child’s life." Image: Supplied.

Let’s empower families and ensure every woman knows to ask their doctor about CMV before pregnancy.

Over the last five years, we have worked closely with our paediatrician, countless specialists and experts in their field, carers, educators, medical professionals and therapists to ensure Christopher is comfortable, generally well, active and living his best life. These people are not only essential to Christopher’s overall wellbeing, they have become an integral part of our support network; they have become our friends.

Despite the challenges Christopher faces, he has a smile to melt the coldest of hearts and the most infectious giggle. He has determination, courage, spunk and so much love.

While our life is not without its fair share of heartache, worry and stress - the pure joy and light he brings our lives is indescribable. We are so incredibly grateful for each and every day we get to spend with our warrior.

Thanks to the financial support of donors, Cerebral Palsy Alliance is running a CMV awareness campaign in conjunction with CMV Australia.

For more information visit:
http://cerebralpalsy.org.au/cmv
https://www.cmv.org.au
https://www.health.nsw.gov.au/Infectious/factsheets/Pages/cmv-and-pregnancy.aspx

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