Finding a solution to twins’ problem

Leslie Lopez-Sookoo, the mother of twin boys who were born without an anus,  has called for more information to be made available to the parents of babies with this type of condition. The boys, Johan and Tariq, were born on June 1 at Mt Hope Women’s Hospital and the following day a colostomy (surgical procedure in which the end of the large intestine is brought to the surface of the abdomen) was done on both boys. They have a stoma, a passage created in which the end of the bowel protrudes through the abdominal wall to allow stool and urine to pass. The waste matter is collected in a pouch.

Lopez-Sookoo and her husband Ruston found out from the Hospital for Sick Children in Canada that corrective surgery to create an opening for the anus should “ideally” be done when the babies are four months old. She explained that if surgery is delayed until the boys are older, the sphincter muscle for the anus could become “lazy” because of not being used. “It will become more difficult as time goes by.” Lopez-Sookoo said when doctors spoke about the twins’ condition they did so in clinical terms. She said information should be conveyed in a way parents could understand. The word anal atresia (a congenital obstruction of the anal opening) was used often. “They use that word and continue using it, and talk about the imperforated anus but the parent is clueless.” Lopez-Sookoo looked up these words in a medical dictionary and was able to get information about the condition.

The Sookoos received advice from their doctor about where they could get more information — the Internet. Four days after leaving hospital, Lopez-Sookoo was on the Internet researching and learning of the experience of other parents. When the twins were born Leslie Lopez-Sookoo and her husband Ruston thought their condition was rare but she found out there were other parents in TT dealing with the same situation. “Parents don’t need to be as worried as most are. Some of them worried they don’t want their babies to go through surgery.” A nurse from the Ostomy Society of TT also visited the Sookoos and spoke to them about a colostomy and how to care for a child who has had this surgery. She also showed them a video.

The Sookoos realised there are other children like their sons and their condition was not rare. Lopez-Sookoo said parents must be advised that children with anal atresia may suffer from other health related conditions. Heart, kidney and blood tests were done on the twins as well as bone x-rays. “You don’t want to find out that the child has something else a year later.” The Sookoos are trying to raise US$50,000 by February to send their sons abroad for surgery. The “touch our lives Fund” is at First Citizens Bank, ac-count #1411327.