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Paul

CMV congenital

DIAGNOSIS

Pablo was a preemie, born at 35 weeks and weighing over 3kg.  We weren’t overly worried because his older brother had been born at the same gestation, and was perfectly healthy.  However, during his first few months we began to notice that something wasn’t right.

During his second month, we noticed he cried a lot, he didn’t hold his head up well, and he started to show signs of laryngomalacia (wheezing), nystagmus (involuntary eye movements) and had very stiff hands and legs…  At six months, he was admitted to Hospital St. Joan de Deu for diagnosis.  After three weeks in hospital, and following a large number of tests, he was diagnosed with congenital CMV.

Doctors informed me that during my pregnancy I had been infected with Cytomegalovirus; a virus which is virtually unavoidable to contract, but only becomes dangerous to the fetus if the mother lacks antibodies from a prior infection, which was my case.  As a result, Pablo’s neurons suffered multiple microcalcifications that, according to his doctors, caused severe motor impairment, deafness and blindness for life.

LOOKING FOR TREATMENTS

After diagnosis, we had no choice but to go on, investigating, talking to everyone, and finding strength against all odds.  On this journey we crossed paths with folks who were angels, and who filled us with energy and hope.

Since the day we left the hospital, we’ve been trying every type of treatment that seems safe, but never really knowing what the results would be.  Among others, I’d mention: Bobath, Padovan, Philadelphia Method (Glenn Doman), Foltra Foundation, Equine Therapy, Osteopathy, hydro treatment.

Early results included the total recovery of his sight and hearing, which remain practically perfect to this day, at age 14.   And, with other complementary therapies such as music therapy, speech therapy, orofactial stimulation Pablo has achieved great diction – “Wow! It’s a parrot!”  The physical aspects are what remain most affected, and we know this is something that we’ll have to work on for life.  He’s had to have several surgeries, including microsurgery to relax muscle hypertonicity, relocation of a dislocated hip, dual femur fractures from an accident, and repeated doses of botulinum toxin.

We think that he’s made great strides since his initial diagnosis, thanks to daily effort and a lot of luck.  The strength and joy of these children is incredible, and they bring smiles in the hardest moments. 

TODAY

Pablo is currently in his first year of ESO studies at a normal school, he plays with an sledge hockey team, loves soccer, amusement parks, swimming pools, music, Dragon Ball… and you don’t want to have to try and get him off his tablet, PlayStation or laptop, all of which he handles better than most of us!  

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