According to a story from Bangor Daily News, Andrea Dole decided to have a home birth for James, her first child. With the support of her partner, Patrick, two midwives, and a doula, the birth went relatively smoothly, without any major problems. While Andrea and Patrick were infatuated with their newborn son, the midwives soon noticed that something was wrong: James had an abnormally small head, a condition known in the medical field as microcephaly. Upon further medical examination, it was revealed that he also had lissencephaly.
Microcephaly is a condition in which the brain does not develop properly in the womb, which leads to abnormally small head size. It is often present at birth, but in other cases it may develop in the first few years of a person’s life. There are many different genetic abnormalities and syndromes that can cause it, and it can also be acquired. Symptoms include intellectual disability, mobility problems, dwarfism, seizures, and poor speech.
Lissencephaly is a brain disorder in which the brain lacks its normal wrinkles and folds, and is smooth instead. It can be caused by a variety of genetic mutations and can also occur as the result of viral infection or an insufficient blood supply to the developing brain of the fetus. Symptoms include psychomotor impairment, difficulty breathing and swallowing, seizures, failure to thrive, and abnormalities of the digits, hands, and face. Patients typically have reduced life expectancy.
Defying The Odds
Doctors told the family that James probably would only survive for a few weeks. James was admitted to the hospital, but after he began to feed normally, Andrea and Patrick opted to take him home. The medical staff told them to prepare for his death.
As it turns out James is three years old now, and he did not die. However, he can’t talk or walk so taking care of him is still a handful. Despite the fact that he had beaten the odds so far, his parents know that they will outlive him. Andrea and Patrick pride themselves on a minimalist, sustainable lifestyle, but taking care of James had required an entire team of specialists. They also decided to get James a gastronomy tube to simplify feeding him.
While the double diagnosis of microcephaly and lissencephaly has been hard for the young family, they are learning to face the challenges as they come.