Edwards Syndrome Gave Their Daughter Only Weeks to Live, But This Couple is Trying To Make the Most of It

According to a story from the Daily Post, Katie Roy and Tjay Narciso were horrified when doctors told them that their new born daughter Kaila will only survive for a few weeks. Kaila needed emergency surgery on her bowel when she was born, but it took weeks for doctors to realize that she had Edwards syndrome. Now, the young couple is cherishing the limited time that they have with their young daughter.

Edwards syndrome, otherwise known as trisomy 18, is a genetic disorder that is caused by the presence of a third copy of a chromosome, similar to the more common Down syndrome. In Edwards syndrome, chromosome 18 is affected, and a complete third copy or a partial copy may be present.

This syndrome causes a variety of changes; many babies with Edwards syndrome die before they are born. Babies that survive are often small and have heart defects, intellectual disability, and a small head and jaw. Rates of the syndrome increase with the age of the mother, and Edwards syndrome is caused by problems during early development or during the formation of reproductive cells. Most babies born with the condition do not survive long, with a one year survival rate ranging from 5-25 percent. To learn more about this condition, click here.

Kaila was born nearly five weeks premature, weighing only 3 pounds, 11 ounces. Her mother Katie experienced a difficult pregnancy, suffering from migraines and losing her eyesight for several weeks. She had to be admitted to the hospital for about a month as a result. Despite the fact that she was being closely monitored, doctors failed to identify Edwards syndrome, although they did recognize that she would need surgery for her bowel. Kaila was not breathing when she was born and had to be placed on a ventilator for half a day.

After her diagnosis, that family decided to temporarily move to a hospice center in order to enjoy the limited time that they will have with Kaila; the news was especially difficult for Katie’s son, David, to grasp. While the family spends quality time with Kaila, a JustGiving page has been started in order to support the family’s funeral costs, which you can find here.

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