But Mackenzie was born with HLHS – a rare congenital heart defect in which the left side of her heart is grossly underdeveloped. She would not have survived more than a few days without her first open heart surgery. She has had two open-heart surgeries, two heart catheterizations, one cardiac arrest and one full respiratory arrest for which she had to be resuscitated. Her medical conditions require skilled nursing care and supervision, which is made more complex due to a compromised immune system. Although she does take some food and drink by mouth, Mackenzie receives most nutrition through a gastrointestinal tube inserted directly into her stomach.
Mackenzie requires intensive, constant care at home. Our daily routine includes tube feedings, routine blood pressure checks, monitoring all fluid intake and output, checking oxygen levels, administering medications on an hourly basis, as well as the normal routines associated with caring for a toddler. Mackenzie also requires physical, speech and nutritional therapy each week. In the midst of all of this, we strive to give Mackenzie the experiences she loves most: playing with her toys, listening to music, reading books and, most of all, spending time with other family members.
By the time she is three, Mackenzie will require the last of three major corrective heart surgeries. She will also need two more catheterizations, as well as a procedure to regulate her heartbeat. We are hopeful but extremely cautious. Much of what we need for Mackenzie is not covered by insurance: prescriptions, equipment, co-pays, travel expenses and other costs. It is becoming more difficult to afford the care required to help our daughter. Mackenzie is the light of our lives. If you could meet her, I promise you would instantly see why.