I’ve been holding on to this beautiful girl’s images because I wanted to be able to post her story along with the photos but because today is World Down Syndrome Day, I figured it’s the perfect day to post them! Below is a little bit of Briley’s story that her mom sent me when she initially nominated her for my February Share the Love sessions.
Briley is a 6 year old little fire cracker that was born not only with an extra chromosome (Down Syndrome) but also the Congenital Heart Defect- Tetrology of Fallot. Upon birth we were surprised with Briley’s diagnosis of both DS and the heart defect as neither had been picked up in prenatal ultrasounds. Briley had her first helicopter ride at not even 12 hours old and was transferred to Children’s Hospital NOLA where she stayed for a week in NICU and there we learned more about her CHD. Due to her CHD, Briley had low oxygen levels and this would cause her to tire easily when feeding. She was also at a risk for having “tet spells”, which was a rapid loss of oxygen due to the the CHD. Imagine being a first time mom, and you cannot enjoy being a mother because you are constantly worried about when the tet spell will happen (they are random) and if your child is getting enough food because she is too tired to eat. With the blessing of modern medicine, Briley had heart repair surgery for her TOF at 6 months old. Her color due to increased oxygen/blood flow increased immediately and her eating… we could not stop her from eating! Today at 6 (7 in April) we are still monitored yearly by the cardiologist at Children’s. On our last visit we were advised that that were some concerns from the growth of the heart and the initial fixes had started to leak. We were told to prepare for an additional surgery in the next few years. Thanks to the doctors at Children’s and the advances of medicine, my daughter (and many other children) have been given life saving surgeries that were honestly not options some 20-30 years ago.
Amanda – thank you again for sharing Briley’s story and for allowing me to photograph her for National Heart Month! And Happy World Down Syndrome Day Briley!