Lara’s Story
Diagnosis
Our CMV journey started postnatally from an easy and uncomplicated pregnancy, when my second daughter Lara turned 3 months.
She was happy and healthy and developing well until the day she was admitted to the childrens’ ward with a petechial rash all over her body and unexplained pancytopenia and bone marrow suppression meaning that all red cells, white cells and especially platelets in her little body kept dropping. She required multiple transfusions over the week she spent in hospital. It was a week filled with anxiety and worries as the medical team could not put a finger on what was causing the symptoms and obviously prepared us for the worst. Clearly no one had thought about CMV straight away as she was asymptomatic at birth but before we were transferred to a more specialised hospital for further testing, they informed us that a very high viral load was found in Lara’s blood. It was CMV.
No one talks about CMV
I have a midwifery background, so I know quite a lot about CMV but still I was in disbelief as I did not know I was positive with a past infection in the first place, or that I had ever been tested during booking bloods. It literally was not discussed or spoken about like the usual conversations about not cleaning the cat litter and washing your salad!
I remember feeling very disorientated as suddenly something with possible long-term damage was being associated with my baby. I also felt guilty for some time thinking I should have known better and that having a younger daughter (2 years old) attending preschool and playgroups during my pregnancy put my precious baby at risk. As a midwife the guilt was doubled as I thought I should have known best, however neither as a professional nor as a mum did I have enough knowledge to help prevent this and this is why I feel very passionate about spreading awareness.
I experienced the lack of awareness both as a professional and as a parent.
However, I still try to be kind to myself.
Being brave for Lara
As CMV viral load was not decreasing, and transfusions were still needed every two days Lara needed a more stable central line to administer blood products and antiviral medication (if she was not able to take the oral form). I had to take my 3 months old baby to the theatre to have a Picc line inserted, and I also had to face being discharged home and take care of it myself as this was deemed as a long-term condition. I decided to look at how brave Lara was being throughout this and that I needed to face this with the same smile and strength (she is a very, very smiley baby!).
I had no obstacles in accessing the healthcare system once CMV was found. Appointments and follow ups were put in place swiftly, as well as hospital and at home facilities. However, there is a national shortage of the antiviral medication which agreed with Lara more, so we keep on switching issuer and this is frustrating at times.
Fast forward 2 months and the Picc line has been removed, transfusions are not needed so her bone marrow has started to recover, and the viral load is decreasing nicely. The impact on my family and especially on my older daughter has mainly come from the long hospital stay and recurrent hospital visits when Lara needed transfusions which meant I could not be the present mum I used to be. As of today, Lara’s hearing and vision tests are all clear so the common symptoms of CMV have not impacted us as such, however the fact that Lara is on antiviral medication has had an impact on our everyday life because the medication itself is not pleasant and causes her stomach discomfort and irritability, challenging the serenity of our whole family.
Advice to parents of a child with a cCMV diagnosis
My advice to other parents would be to talk through feelings of worry and sadness with people who are close to you.
CMV can make you feel helpless at times but never forget that you are your child’s strength and hope and possibly the only true way of fighting this back. Be in the moment with them.