Born with only 2 percent of his brain, to a family in Cumbria, England, Noah Wall had very low chances of survival. When he was born, the doctors said even if he survived, he would be severely physically and developmentally disabled.
In uterus, Noah had developed a rare condition of spina bifida where his skull filled with fluid, crushing his brain down. Doctors advised his parents, Shelly and Rob, to abort him on five occasions. But they refused. After Noah’s birth, an open wound in his back was closed and a shunt was installed to drain the fluid from his brain.
To everyone’s surprise, Noah’s brain began to grow. When he turned 3, a brain scan showed that his brain had expanded to 80% of a normal brain. The family continues to keep Noah’s brain stimulated to aid his neurological growth. Noah, who is always smiling, is learning to read and write and can count, and goes to school. His brain continues to develop and after some surgeries on his hips, Noah’s family believes he may also be able to walk one day.
Anencephaly- Causes, Symptoms, and Life Expectancy
Anencephaly is a birth defect in which parts of the brain, skull and scalp of the foetus do not form completely during the development in the womb.
It occurs when the neural tube (a narrow channel in the foetus that normally closes to form the spinal cord and brain) does not close properly between the third and fourth weeks of pregnancy. Babies born with anencephaly do not have some or most part of the brain. These babies are unconscious, cannot feel, and are usually blind and deaf.
Anencephaly is a fatal condition. Infants with anencephaly are stillborn in about 75 percent of cases. Babies who survive die within several hours, days, or weeks.
What causes anencephaly?
The exact reasons behind anencephaly are unknown. Though it is said, a lack of folic acid (vitamin B9) before and during pregnancy may increase the chance of neural tube defects, such as anencephaly or spina bifida (a birth defect in which the spine is exposed). If a woman takes certain prescription drugs during pregnancy, such as drugs for diabetes, this may increase the risk of having a baby with anencephaly.
In about 90 percent of cases, the parents of an anencephalic infant do not have a family history of the disorder. However, if the parents have had a child who was born with anencephaly, there is a higher chance of having another baby with this condition. The recurrence rate for anencephaly is 4 to 5 percent, and rises to 10 to 13 percent if the parents have had two other children with anencephaly.
How common is anencephaly?
One in 5,000 babies is born with anencephaly each year, according to the Centers for Disease Control. Though the exact number is not known because many pregnancies involving neural tube defects end in miscarriage.
How is anencephaly diagnosed?
Prenatal tests for anencephaly include:
Tests may show high levels of alpha-fetoprotein (a protein produced by the immature liver cells of the foetus).
High-frequency sound waves and a computer is used to make an image (sonogram) of the developing foetus. Abnormalities related to anencephaly can be seen on the sonogram.
A small amount of fluid is taken from the amniotic sac using a long needle which is inserted through the abdomen. The fluid is then studied to measure the levels of alpha-fetoprotein and Acetylcholinesterase (enzyme that catalyses the breakdown of acetylcholine and of some other choline esters that function as neurotransmitters). Higher levels compared to normal levels are linked to neural tube defects, such as anencephaly.
This imaging test uses a magnet to generate an image of the developing foetus. The brain and its other structures can be seen in more detail than the ultrasound alone.
Any of these procedures can be conducted between the 14th and 18th weeks of pregnancy. The foetal MRI can be performed at any point of the pregnancy.
How is anencephaly treated?
There is no treatment for anencephaly. The baby having anencephaly is provided with special care. The baby should be kept warm and areas of the brain that are exposed must be protected.
How can anencephaly be prevented?
Methods for preventing anencephaly include the following:
Eating nutritious foods and taking a vitamin supplement before and during pregnancy may help prevent neural tube birth defects. It is very important that you take enough folic acid. Since most women do not get enough folic acid from food alone, therefore, women of childbearing age should take a daily multivitamin supplement with at least 400 micrograms of folic acid. The synthetic form of the vitamin is more easily absorbed and utilized by the body than the form which occurs naturally in foods.
Other good sources of folic acid include leafy green vegetables, dried beans, oranges, and orange juice. Some products are fortified with folic acid, including enriched flour, rice, bread, cereals and pasta.
Folic acid supplements
Pregnant women who have previously given birth to a baby with a neural tube defect are at higher risk and may have to take higher amounts of folic acid during pregnancy. Women should talk to their doctors about the recommended amount of folic acid. It is suggested that women who have had a history of pregnancy involving a neural tube defect should take 4 mg of folic acid, beginning one to two months before conception through their first trimester of pregnancy, strictly under a doctor’s supervision.