written by Amy, Alana’s mother
Alana was born on July 22, 2011; three weeks before her due date and weighing 5 pounds, 11 ounces. She was a healthy baby (or so we thought) and didn’t even need to be in the NICU. We took her home two days later and she had no desire to eat. I tried nursing and she would immediately fall asleep so after several failed attempts, we tried feeding her from a bottle. She would eat less than an ounce and fall asleep. This continued for several months. At each doctor appointment, I would tell the pediatrician my concerns with Alana’s poor eating habits and she would give me suggestions to try at home, but nothing seemed to work. By one year old, she weighed only 10 pounds, 6 ounces.
Alana would also get very sick as a baby and toddler. She’s had pneumonia six times and was hospitalized for two of them. Her immune system was very low so if anyone in the family had a cold, she would catch it and develop pneumonia or RSV quickly. She rarely had an appetite and often lost weight. Her pediatrician ordered several blood tests for her, but they all came back normal. We needed answers and the doctors could not figure out what was wrong with Alana. We were her only advocates and it was a long, hard fight with the medical staff. Alana was born with Congenital Heart Disease that should have been diagnosed at birth or shortly after; however, we didn’t find out about her heart defects until she was three years old!
We were able to meet with a gastroenterologist right before Alana’s 3rd birthday. She was becoming malnourished, so at three years old she had a feeding tube surgically placed to help her gain weight. During this hospital stay, the doctors noticed Alana’s blood pressure was consistently really high (150/70); a 3-year-old’s blood pressure should be about 95/65. At first, I thought her blood pressure was so high because she had extreme anxiety about being in the hospital and she would scream whenever anyone with scrubs came near her. I became a little concerned when her blood pressure was still in the 150’s while she was sleeping. Her nurse that evening decided to check her blood pressure in her legs and found it to be in the low range. The nurse paged the doctor to let him know she thought there may be something wrong. The next morning, Alana had an echocardiogram where she was diagnosed with severe Coarctation of the Aorta and a Bicuspid Aortic Valve. For three years, her heart had been pumping much harder than it should have because her aorta was blocking 90% of the blood to her lower body and needed to compensate for the lack of blood flow. The cardiologist was shocked that Alana hadn’t gone into heart failure or had a stroke. She had heart surgery six days later to correct the Coarctation of the Aorta. She will need at least one more heart surgery to replace her faulty aortic valve. Alana has other health complications not related to the heart as well. She was diagnosed with gastroparesis at age four and has had asthma since she was nine months old.
Today, Alana is doing very well. Her heart is working like it should and she does not have any restrictions. She will need to have yearly check-ups with her cardiologist for the rest of her life.
When our family heard the diagnosis of Alana’s Congenital Heart Defects, we were in complete shock. We could not believe it took many medical professionals so long to find her heart defects; however, we are forever grateful for the cardiologists at Valley Children’s Hospital in Madera, CA for saving our daughter’s life. Through all of this, we have found a wonderful community of other CHD families and we hope Alana’s story is an inspiration for others. Alana received a Heart Hero Cape and she asks to wear it everywhere. Our family even ran in the Superhero Heart Run this past year while Alana proudly wore her Heart Hero Cape.
She tells everyone she’s a superhero because she has a special heart and I couldn’t agree more!