Each life is precious: The life of children with severe brain damage

YNET    The children of the Chronic Respiratory Care Ward at Herzog Hospital have severe brain damage, but for the dedicated staff it is a priority to give them quality of life.

When Eli arrives to visit his 14-year-old daughter Rachel at the Children's Chronic Respiratory Care Department in Herzog Hospital in Jerusalem, he fights to hold back the tears. Instead of crying, he tries to be positive, telling her about the upcoming holiday, sharing all the recent news from their large family, and praying with her.  

Sometimes, as he prepares to say goodbye to his beloved child, he thinks she is moving her head as though trying to reach for him. But, painfully, he understands that she can't.

The department opened in 2004, based on the successful treatment of adults requiring respiratory support. There are at present 24 children in the ward - some are conscious and others have minimal response to stimulus.[..]

 "Almost half of our children had periods of hypoxia due to various disastrous incidents, such as a baby who suffocated on the lace of a pacifier or a toddler who pushed his head inside a pickle jar full of water," Gil says. 

"The second group contains children with congenital problems such as a developmental defect leading to brain dysfunction, a hereditary disease or malfunction created by some genetic defect during fertilization, or complications following meningitis, which unfortunately still occur. The common denominator is their constant dependence on a ventilator," she says.   

"However, our work doesn't end with prolonging their lives; it is also about improving their quality of life. Our children receive physical therapy, occupational therapy, speech therapy, therapy with animals, music therapy, bibliotherapy and more. The adherence to daily stimulation has certainly proven itself; there are conclusive physiological responses, for example their muscles, which under normal circumstances are very rigid, become looser, and the heart rate and blood pressure decrease.  

"Furthermore we have noticed that the children look at us and recognize us, despite the fact that they can't communicate verbally. Obviously they feel more than they understand."  [...]

At first glance they seem so helpless, remote and in pain that crying is an inevitable response. But when you sit next to one of the children, who is wrapped safely in the arms of one of their special education teachers, the picture changes. [...]

Often," says Prof. Gil, "when people hear about this ward, they immediately think 'What kind of life is this?' But studies show that children with severe disabilities are content with their lives; it all comes down to how you look at it. In our culture, and especially for me as a Holocaust survivor, life is so precious that it's unthinkable to give it up.

"There are hospitals around the world where when the doctor breaks it to the parents that there is nothing he or she can do to improve their child's condition, the parents take one last photograph with their child, they say their goodbyes and ask for the child to be disconnected from life support. 

"In Israel, apart of the fact that it is forbidden by law, it just never happens. Throughout the years we have had cases where we have succeeded in weaning children off the ventilator, and these are our greatest success stories."  [...]