1/2 Jari (right) regularly wears hearing aids (photo: Lobke Kapteijns).
The lives of Anne (34) and Nicky de Fost (40) from Gemert have been turned upside down. Baby Jari was born with a seemingly harmless virus: CMV. But that virus is already having serious consequences. According to his parents, better information could have prevented this. “So little is known about it. Future parents should know that this exists, because you don’t wish this on anyone.”
Jari is now ten months old, but he already has a laundry list of specialists and medication in his first months. He wears hearing aids and cannot see well. Twice he has been rushed to hospital with epilepsy.
Nothing comes naturally for Jari. “He has only just moved his hands to his face. He can’t hold or grab anything. When you lift it up, it’s very limp. He can’t sit up on his own or eat normal food without choking,” Anne explains.
“The virus has a harmful effect on the growth of his brain.”
All of this is caused by CMV, or the cytomegalovirus. A virus that is related to herpes, also known from cold sores and chicken pox: very contagious and easily transmitted through close contact, through saliva and urine.
If you contract the virus after birth, it is fairly harmless. “One person gets a cold or the flu, another does not notice anything”, Anne explains. “But if you catch the virus during pregnancy, it can have major consequences for the baby.”
About 850 children are born with CMV every year. The consequences are very different. Some children are only deaf in one ear. Or it has much more consequences. Like not being able to walk, see and hear. “Jari probably got it very early in the pregnancy and that has a detrimental effect on the growth of his brain.”
At the 21-week ultrasound, Anne and Nicky heard that there was fluid in the brain and that CMV could be present. But tests were inconclusive and doctors said it could go either way. Abortion was suggested, but Anne and Nicky wanted to assume the positive.
But after his birth, the bad news came quickly: Jari has CMV. “During the first six months we didn’t know where to go, where to get help. It is the most common virus in the Netherlands, but little is known about it,” says Anne. They find it most disturbing that there has been hardly any information about CMV and how to prevent infection.
“Will we soon have a completely disabled child or will it be better than expected?”
For example, the chance of an infection during pregnancy is reduced if you wash your hands well after contact with saliva or urine. It is also wise not to kiss small children on the mouth and not to eat with the same cutlery.
Now, ten months later, they have learned a lot through their own detective work. “I think the worst thing is that we had to figure everything out on our own, so little is known. Even when Jari was picked up by an ambulance, the paramedics knew nothing about the virus,” says Anne.
To prevent parents from suffering the same fate, Anne and Nicky want more attention for CMV. Nicky therefore steps on the cross trainer in Gemert for twelve hours on September 2 raise money for more research.
What the future brings remains uncertain. “Will we soon have a completely disabled child or will it be better than expected? You want to accept it but you don’t know what to accept. Jari is a cheerful little guy, that keeps us going.”
