I saw part of a documentary last night about four children in the United Kingdom who suffer from Harlequin type ichthyosis. This is a serious, hereditary skin disease that causes skin to become abnormally thick and cracked, as well as eyes, ears and noses to be stunted.
Because the skin is the body’s way of keeping moisture in and bacteria out, people with this disease can become dehydrated very quickly and the risk of infection is also very high. For this reason, babies born with this disease never used to survive the first few hours or days after birth.
The disease can now be managed to some extent by an intensive regimen of bathing and “creaming” – smearing thick, greasy cream all over one’s body three or more times a day. In spite of these treatments, few people with this painful, disfiguring disease live into adulthood.
A diagram showing symptoms of harlequin ichthyosis in a baby. Copyright Foundation for Ichthyosis and Related Skin Types.
When Dana Bowen, one of the children with this disease that was featured in the documentary, was born, her condition was obvious. Her parents cared for her over the next seven years, becoming intimately familiar with the debilitating disease and what it was doing to their child.
They were told that if they had another child, the chance of it being born with the same disease were one in four (twenty-five percent). They decided to risk it. When Lara Bowen was born, she had the disease too. Seeing the tiny child’s reddened skin covered in scales was heartbreaking.
Is it ethical to have a child when the risk of it having a severe hereditary disease are so high?