It was their 4th day in the hospital and Laura and her husband were rolling their baby girl, Zuri, down to her first barium swallow study. They were trying to figure out why she was having so many feeding difficulties. As they reached the hospital elevator Zuri’s doctor ran to join them because he had her genetic test results. As the elevator doors closed the doctor informed them that Zuri had something called Digeorge Syndrome. This was the beginning of their 22q journey.
Throughout this episode Laura shares her moments of feeling like the "crazy mom", questioning doctors and searching for answers for her daughter who would not stop throwing up. She also shares how the doctors missed Zuri's tetralogy of Fallot in utero which almost killed her during delivery.
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Within this episode we discussed:
- Tetralogy of Fallot is a birth defect that affects normal blood flow through the heart. It happens when a baby’s heart does not form correctly as the baby grows and develops in the mother’s womb during pregnancy.
- VACTERL stands for vertebral defects, anal atresia, cardiac defects, tracheo-esophageal fistula, renal anomalies, and limb abnormalities.
- Uterine rupture is spontaneous tearing of the uterus that may result in the fetus being expelled into the peritoneal cavity. Uterine rupture is rare. It can occur during late pregnancy or active labor. Uterine rupture occurs most often along healed scar lines in women who have had prior cesarean deliveries.
- A nasogastric (NG) tube is a thin, soft tube that goes in through the nose, down the throat, and into the stomach. They're used to feed formula to a child who can't get nutrition by mouth. Sometimes, kids get medicine through the tube.
- A gastrostomy tube, often called a G-tube, is a surgically placed device used to give direct access to your child's stomach for supplemental feeding, hydration or medication.
- Anoplasty is a simple outpatient procedure that can be used to relocate the mild forms of anterior ectopic anus.
- Nissen fundoplication. In this procedure, the surgeon wraps the top of the stomach around the lower esophagus. This reinforces the lower esophageal sphincter, making it less likely that acid will back up in the esophagus.
- The vagus nerve also called the pneumogastric nerve, is responsible for various internal organ functions, including: digestion, heart rate, breathing. cardiovascular activity, reflex actions, such as coughing, sneezing, swallowing, and vomiting. It plays a role in the autonomic nervous system, which controls actions people do unconsciously, such as breathing and digestion.
- Uncontrollable retching, non stop.
- Grand mal seizure causes a loss of consciousness and violent muscle contractions.
If you would like to contact the 22q Podcast with any questions, comments or if you are interested on being on this podcast email Becky at 22qpodcast@gmail.com. Don't forget to subscribe and share this podcast to help raise awareness about 22q. And never forget 22q family that YOU are not alone.
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