Adriana is an 18-month old baby girl born with multiple congenital defects. She was born with a very large Omphalocele, whereby some of her internal organs were outside her body at birth. This is a life-threatening condition, requiring her to be in surgery merely 2 hours after birth.
Adriana also has a complex cardiac defect known as Tetralogy of Fallot with Pulmonary Atresia, Left Pulmonary Artery Stenosis, Left Pulmonary Venous Compression, a Left Frontal Cystic Hygroma (cyst on the brain), Left-sided External Airway Compression, Tracheomalacia, True Right Tracheal Bronchus, Grade 2 Laryngeal Cleft, GERD, a G-tube, and Left Eye Ptosis.
Adriana has been in the hospital almost every month of her life with 9 surgeries & 7 procedures, including open-heart surgery. She will need subsequent open-heart surgeries every few years to replace “homografts” that will either be outgrown or will break down over time.
Because of her various airway issues, Adriana has had 2 full respiratory arrests, needing resuscitation and intubation each time. With no alternative, she received a tracheostomy. She’s now on humidified oxygen during the day, but must sleep on a ventilator at night.
Without the assistance of nursing for her first 14 months, Adriana’s mom & dad slept in shifts to ensure she was not aspirating during her continuous g-tube feedings. With each of them only managing 4 hours of sleep per day if they were lucky, dad had to continue to work full time & mom spent her days taking blood pressure readings, administering medications, checking O2 saturations, and monitoring feedings via pump. The recent approval of nursing has not proven much relief due to the difficulty in finding qualified personnel to help the family.
In losing one income since the birth of Adriana the family has incurred nearly $2,000 in additional monthly expenses to cover the cost of their health insurance & the repayment of new loans taken out to help their daughter. The parents 401 (K) have also been exhausted. This does not include the nearly $30,000 in out-of-pocket medical expenses not covered by insurance, and the expense of traveling to Boston twice in the last 6 months. With a return trip to Boston planned for January 2007, in addition to the upcoming out-of-network medical expenses, they are faced once again with how to pay for travel, food, and lodging during her admission.
At 18-months, Adriana is still unable to crawl or walk & was recently fitted for a stroller/wheelchair. In the near future, she will need a stander/walker, a hospital-style crib, and a generator to keep her life support equipment functioning during power outages.
