Rare Congenital Infant Heart Defect for Madilyn

On the day of little Madilyns birth all prenatal doctor's appointments predicted a happy healthy baby.   TAPVR or Total Anomalous Pulmonary Venous Return is very rare heart condition affecting 1 in 10,000 new born babies in the USA.  This rare condition is almost never detected until shortly after birth.

In a baby with TAPVR, oxygen-rich blood does not return from the lungs to the left atrium. Instead, the oxygen-rich blood returns to the right side of the heart.  Oxygen-rich blood mixes with oxygen-poor blood. This causes the baby to get less oxygen than is needed to the body.  The solution to this is immediate open heart surgery.  

5 minutes after Madilyns birth the doctors snatched her away from the parents because they did not like her color.  At the time Madilyn was turning blue and the doctors knew there was a problem.  Since TAPVR is so rare this was not the first diagnosis.  After about 3 hours of testing and experimentation the loving doctors and nurses correctly diagnosed the condition as rare TAPVR.  By this time it was 1:00 am Saturday morning.  By 2:00 am the child and father were life flighted to Primary Children's in Utah.  The same Saturday afternoon doctors performed open heart surgery on baby Madilyn.  They needed to leave her open for 2 days to make sure the surgery was a success.  The scar and stitches are about 6 inches long on her chest.  

After visiting with this young family I understand that they do have insurance to help pay for this.   Costs all together including a life saving open heart surgery can run $200,000 to $300,000.  They believe a lot will be taken care of and will probably have to finance some costs.  The father has been on unpaid Paternity leave for 2 weeks.  I am hoping to raise a couple thousand dollars to cover the lost wages and maybe pay a couple months rent for them.