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Diagnosis as a babyOur Stories

Rubie May

By December 23, 2021June 28th, 2022No Comments
Rubie May

December 2011

When I was pregnant my baby was measuring small and I had to go for weekly dopplers and fortnightly growth scans.

A month before my due date, I was told there was no change in my baby’s growth scans and that I was going to be induced. Rubie May was not growing and was distressed in the womb. Rubie May was born 4 weeks premature, weighing only 3lb 4oz via emergency c-section.

Born with a platelet rash, enlarged liver and spleen, Rubie was taken to the neonatal unit within minutes of being born.

When I went down to see her the next day she was in an incubator with a tube in her nose and was hooked up to machine checking her heart rate and oxygen levels. The doctors were taking were blood samples and urine samples because they thought she had an infection but was unsure what it was. We were told there could be a chance she could be deaf due to the infection.

When Rubie May was 4 days old we found out she had cCMV.

She started a 6 week course of ganciclovir in hospital on the neonatal unit, was in oxygen for 2 weeks and was tube feed for about 3 weeks.

8 weeks later, Rubie deteriorated. The CMV had become active again and had come back worse than when she was born. Rubie May was then put back on another 6 week course of ganciclovir then followed by an 8 month course of valaganciclovir.

Rubie also had a number of platelet transfusions, a liver scan, heart scans and a brain scan which shown brain calcifications. She also had hearing and eye tests. Rubie started physiotherapy at about 5 weeks to help with her muscles and her development for the future

Rubie came home from hospital when she was 6 months old and has done really well since then.

Rubie is now 2 years old, growing perfectly, she has full hearing & sight, eats & drinks orally, says a few words, she can sit without support, stand with minimal support (is almost standing on her own) and she walks with support.

Rubie has to have physiotherapy every 2 weeks, portage every week. She will be starting nursery next year for children with additional needs, goes for regular hearing and sight tests. She also has regular bloods and sees her consultant and development doctor every 6-8 weeks.

She is my little miracle, I don’t know what I would do without her. I love her all the world.

Written by Rubie’s mummy Sophie.