"What's Wrong With You?" with Lauren

Send us a text

Lauren shares her story about her son who was surprisingly born different than his twin brother. Lack of knowledge leads this to be a taboo topic. Momming is hard as it is, but then you add medical complexities and you are on a whirlwind that you don't know how to navigate at the beginning. There is a lot of learning involved, friendship changes, and community showing up that you may not expect. Asking questions is okay! Preferably "What is your diagnosis"? over "What's wrong with you?".
BOOK REFERENCES:
Uniquely Me Foundation - https://www.uniquelymefoundation.org/about-us/
The Wonderful Way You Are by Sarah Elizabeth Brooks
https://www.amazon.com/Wonderful-Way-You-Are-Special/dp/1953550002
TAR Syndrome:
(from medlineplus.gov)
Thrombocytopenia-absent radius (TAR) syndrome is characterized by the absence of a bone called the radius in each forearm and a shortage (deficiency) of blood cells involved in clotting (platelets). This platelet deficiency (thrombocytopenia) usually appears during infancy and becomes less severe over time; in some cases the platelet levels become normal.

Thrombocytopenia prevents normal blood clotting, resulting in easy bruising and frequent nosebleeds. Potentially life-threatening episodes of severe bleeding (hemorrhages) may occur in the brain and other organs, especially during the first year of life. Hemorrhages can damage the brain and lead to intellectual disability. Affected children who survive this period and do not have damaging hemorrhages in the brain usually have a normal life expectancy and normal intellectual development.

The severity of skeletal problems in TAR syndrome varies among affected individuals. The radius, which is the bone on the thumb side of the forearm, is almost always missing in both arms. The other bone in the forearm, which is called the ulna, is sometimes underdeveloped or absent in one or both arms. TAR syndrome is unusual among similar malformations in that affected individuals have thumbs, while people with other conditions involving an absent radius typically do not. However, there may be other abnormalities of the hands, such as webbed or fused fingers (syndactyly) or curved pinky fingers (fifth finger clinodactyly). Some people with TAR syndrome also have skeletal abnormalities affecting the upper arms, legs, or hip sockets.

Other features that can occur in TAR syndrome include malformations of the heart or kidneys. Some people with this disorder have unusual facial features including a small lower jaw (micrognathia), a prominent forehead, and low-set ears. About half of affected individuals have allergic reactions to cow's milk that may worsen the thrombocytopenia associated with this disorder.

Be sure to subscribe to TABOOBS POD wherever you get your podcasts!
If you enjoyed today's episode, please be sure to leave a 5 star review!
Do you have a taboo topic you want to discuss? If so, email [email protected] today.