With Every Beat: Heart Disease Awareness

Monroe Kate Lefort, now 1yrs old was born with a rare Congenital Heart Disease (CHD), Double Outlet Right Ventricle: Tetralogy of Fallot. Most CHDs are not detectable via ultrasound prenatally because the mothers heart is doing almost all of the work. During the standard newborn screening immediately after birth, a murmur was detected and again verified 24-hours post-delivery. Her first of many ECHOs was conducted and it was the first time that Monroe cried since birth; she began to turn blue. Within minutes after completing the exam, a team of cardiologist entered, Monroe was admitted into the NICU and her diagnosis was made. Preparations began for her first open heart surgery to take place at 3 months old. The average oxygen level is between 95 – 100 with a low 02 reading being 91; Monroe was averaging 65 in the days leading up to surgery. Each time she would get worked up or cry, her oxygen levels would drop at a significant rate and oxygen would have to be administered. A 3 month old heart is approximately the size of a kiwi; Monroe’s hole was approximately .5in and her pulmonary valve was more than 2x smaller than it should be. The valve was unable to be saved and a patch was put into place to close the hole. A common misconception is that this is an isolated disease that is resolved with surgery, however it is in fact a life-long condition that must be clinically followed. Each person is different but it is anticipated that Monroe will need her first valve between the ages of 5 – 10yrs old. It is averaged that a valve can last between 5 – 7yrs but can be less or more. Each time a valve is placed, she will undergo open heart surgery.

For those that know her, surgery was just the beginning of a very challenging first year of life yet she always meets it with a smile. Her expressions and reactions are incredibly candid - she is far from shy and as you can imagine, loves being on the move! Her optimistic personality is a daily reminder that life is such a blessing and to take it in stride – she is a true marvel and incredibly resilient.

Thank you for supporting or just taking a moment to better understand her story!