Abby and Betsy: The lucky, unlucky ones
Betsy was born at 33+2/40 & weighed 3lb 2oz. She was delivered via caesarean section, after 2 weeks of close antenatal monitoring for severe IUGR, ventriculomegaly & abnormal dopplers. This was picked up following a referral from my midwife for being small for dates at my 31/40 appointment. I’m forever grateful that this referral was made.
Following delivery, Betsy was taken straight to SCBU. She was found to have an enlarged liver & spleen, jaundice, abnormal blood results, petechiae & was obviously very small. We were very lucky & had a fantastic Consultant, who checked for cCMV immediately & by day 2, we had a confirmed diagnosis. By day 3, Betsy was started on Ganciclovir, later moving to Valganciclovir, which she continued for 6 months (one brief pause when her WBCs became too low).
An unfamiliar virus
The biggest thing we’ve noticed (I wouldn’t necessarily call it a challenge) is the lack of knowledge around CMV – it’s absolutely shocking. Many healthcare professionals that we’re seeing for CMV have such a poor understanding of it. Pregnant Mums NEED to be told about it, when they’re told about Downs/Edwards/Toxoplasmosis etc etc. Because it affects more children than all the children born with those conditions put together!
A shock diagnosis!
We were shocked – when you’re first told about cCMV & everything it can cause, your mind goes into overdrive & you feel like your world is falling apart. I remember that evening, crying on the phone to my husband, who was crying too – so worried about the future & what it may bring.
Will she survive? Will she sit? Will she talk? Will she be able to live a ‘normal’ life?
You then start thinking of the very distant future – marriage, children etc. As previously mentioned, we had a fantastic Consultant & were referred to the ‘infectious diseases’ team at John Radcliffe Hospital. I think having this support helped us immensely, as I know that others haven’t been so lucky. It meant that our questions were always answered & appropriate referrals were made to the relevant teams, so that Betsy always had the best care.
We were unaware of cCMV prior to her diagnosis. As was everyone else when we told them about it.
As mentioned before, I can’t fault the care we received & continue to receive – it’s been exemplary. We use the audiology service very regularly due to Betsy’s hearing loss & are still under the care of community paediatrics & ophthalmology, for the next year (unless any problems arise in the meantime).
Encouraged by progress
Watching Betsy flourish – she amazes us every day & when we think of the tiny little bundle we were presented with 4.5years ago, to where she is now – we couldn’t be more proud of her. She’s had a tougher start in life to many but she just gets on with it. Of course, we still worry every day & are always aware that things may change but we feel like we are the lucky, unlucky ones. Unlucky that she was born with CMV but lucky in how it has affected her.
Seek help & advice. Ask questions. Chase up referrals. Go to support groups, in whatever area your child may need support in. Being with other families who know what you’re going through really is unvaluable & can completely change your outlook on your situation. You are never alone.