Well, Mia’s story is a long one so I will try and condense it for you. Mia is now 3 years old and has had more than 30 hospital admissions and 4 operations since birth and has been on many medications all due to CMV. Mia was born at 34 weeks gestation and had no symptoms at birth. She weighed only 4 pounds 1 ounce. Mia spent 3 weeks in NICU and on day 2 started becoming very jaundiced and was completely limp and unresponsive, so the NICU started testing her for viruses and found that her blood was CMV positive but thought nothing of it and put her on antibiotics. Within 6 days she had become better, still suffering from brachycardia and apnoeas, but seemed to be well. The NICU staff took a urine sample and did a brain ultrasound just in case but they said both were negative. It looked like she was going to be ok.
We came home and things seemed to go severely wrong from there. A few days after coming home we noticed that she still hadn’t woken up. She slept all day and all night, didn’t cry for bottles but would cry all night from 9 pm to 12am every night. She took 2 hours to drink 25mls of her bottle and this just ended up being a never ending story. By 3 months she had lost 45 percent of her birth weight and barely weighed 1 kilo. She also started having seizures.
We took her to our local hospital where they did tests and put an NG tube in and started her on Phenobarbital for epilepsy. Meanwhile we still didn’t know anything about this CMV and did not know that our little girl had suffered from severe brain damage during utero as a result.
Mia had a severe allergic reaction to the medication and was passing out and still not feeding. By this time she was 5 months old and barely 2 kilos. She had stopped breathing on me and we raced her to the children’s hospital. By the time we got there, they had seen her and unbeknownst to me, the doctors didn’t think she would make it through the night, so they just stuck her on a ward and hoped for the best. Well, she made it and that’s when hell really broke out. They had tested her for every part of the body and her brain couldn’t function any of them well at all.
To date, Mia suffers from more than 20 medical conditions due to CMV and still spends more than half of her life in and out of hospital.
Mia is now on CPAP for her breathing, PEG for feeds, Pulsoxymetrie for her heart, and suction for her swallowing issues which have become severe in the last 3 years.
Besides all of her medical issues, she is thriving when it comes to her development. Even though she is now three, she can finally crawl in her own little way and loves it.
Shared by her mother, Lauri