Abigail & Madeleine: My two awesome cats!
Age Grouper: Amateur/non pro athlete.
BRICK: A training session consisting of two disciplines with minimal interruption. For example, bike then run or swim then bike. This type of training helps the body (and mind) transition from using certain muscles during one discipline to using different muscles required for the next discipline. For more information, see “Introduction to Bricks.”
CHD: Congenital Heart Defect
Distance Per Stroke (DPS): For more information, see this article.
Heterotaxy Syndrome: Heterotaxy syndrome is a rare birth defect that involves the heart and other organs. The beginning of the word (hetero-) means “different” and the end (–taxy) means “arrangement.”
In heterotaxy syndrome, paired organs, such as the lungs or kidneys, are often mirror images of one another instead of having the unique characteristics of right and left that are normally present.
There are different forms of heterotaxy syndrome. All usually involve heart defects, of varying type and severity. In addition, organs such as the stomach, intestines, liver and lungs may be in abnormal places in the chest and abdomen. The intestines may have malrotation, which is when the loops of bowel are lined up incorrectly. With this problem the bowel can twist on itself (volvulus), so many children with malrotation need abdominal surgery to correct it. Some children with heterotaxy syndrome can have a very serious condition of the liver called biliary atresia. This also may require surgical intervention. There may also be irregularities with the skeleton, central nervous system and urinary tract.
In some cases of heterotaxy syndrome, the spleen may not work correctly or may be missing entirely. This can cause many problems, because the spleen helps the body fight infections. When the spleen is missing or doesn’t work correctly, patients have a more difficult time recovering from surgeries or infections (patients with heterotaxy may require multiple surgeries). In some cases, there may be a functioning spleen, but it may be divided into several smaller spleens (polysplenia).
Sometimes children with heterotaxy syndrome have dextrocardia syndrome. This means the heart is in the right chest instead of the left chest.
Here are general descriptions of two types of heterotaxy syndrome. The morphology (structure) of the heart varies from child to child. The Cardiac Center team will explain your child’s heart structure to you in detail. Types of heterotaxy include:
- Asplenia or right atrial isomerism: Children with this condition have multiple heart defects. They may have septal defects (holes between the tissue dividing the two sides of the heart) and problems with heart valves, particularly the pulmonary valve. They may also have abnormalities of the blood returning from the lungs to the heart (anomalous pulmonary venous connection). The spleen may be absent (asplenia), and the liver and other organs may be on the wrong side of the body.
- Polysplenia or left atrial isomerism: Children with this condition may have septal defects (holes between the tissue dividing the two sides of the heart) as well as problems with heart valves and the heart’s electrical system. Some children with this problem have complete heart block, which is when the upper-chamber electrical system does not communicate with the lower-chamber electrical system. Most children require pacemakers for this problem. The spleen may be absent, or there may be several small spleens (polysplenia), instead of one spleen.
Taken from Children’s Hospital of Philadelphia (CHOP). For more information, please check out CHOP’s page.
MLH: My Loving Husband
PR: Personal Record
Rest day (also known as recovery day): A day for the body to repair, rebuild and strengthen itself. For more information, see “The Rest is Easy.”
Split: Time for one stage of a triathlon.
Taper: Methodically easing up on the workouts 7-21 days before a race to allow the body to rest and recover in order to optimize performance on race day. For more information see, click here.