1 week old
1 month old
3 months old
Our daughter Anavah was born in November 2008. She was beautiful and seemed healthy, and we left the hospital just a few days after her birth. At two weeks old, my spouse and I found out she had complex congenital heart disease. The left side of her heart was underdeveloped and she had several other serious heart conditions. She was rushed to the hospital and immediately had heart surgery, which was followed by two more open heart surgeries, one after the other.
After her second heart surgery, Anavah suffered severe bleeding because her body went into shock after the surgery. She also had an ischemic brain injury from a lack of oxygen to her brain during the surgery. After her third consecutive heart surgery, Anavah’s lungs collapsed, and she suffered from pulmonary hypertension (high blood pressure in the lungs). In addition, a number of other organs began to fail as a result of her body trying to recover from the surgery. Time and time again the doctors told us that she only had a fifty percent chance to survive...but we never gave up hope.
Thankfully, after two and a half months of being on life support in the intensive care unit, I was able to hold her in my arms. We were told she would likely need more surgeries in the future, but she was finally stable enough to come home.
Bringing her home was both a joy and a challenge. We needed to give her six different types of medications for her heart and lungs, as well as daily shots in her stomach for a blood clot she developed in the hospital. We were not allowed to leave our house for months due to fear of infection, and every night we had to connect her to a heart monitor to make sure she was okay.
2 years old
3 years old
5 years old, first day of gan
A week before Anavah’s third birthday, her doctors told us she was not growing or developing as she needed to. They informed us that she needed another open heart surgery to reconstruct her aortic arch and replace an artificial valve. Anavah’s fourth surgery was a success, and gratefully there were no complications this time. We were able to go home seven days later. At this point, Anavah’s development began to improve much more, and she began to thrive.
Anavah continues to grow and exceed all of our expectations. Because of some developmental setbacks, at the age of four and a half she began preschool in a special education program in Jerusalem. She was in preschool (gan) for three years where she received speech therapy, physical therapy, and occupational therapy.
At the age of seven we decided to put her in a public school for first grade. She was in a small class and had a lot of attention from her teachers. There, she began to read and excel.
6 years old
7 years old, first day of 1st grade
8 years old
Anavah is a blessing in our lives and she is a child full of love and compassion. She has taught all of us to appreciate life and not take our health for granted. Unfortunately, there are more heart surgeries in her future, and she has a long road ahead of her. We have learned, however, to value the small successes as we continue to walk the road of taking care of a child with heart disease.
Bears for Hope began in 2016 because of what we learned from Anavah and her journey. Since Anavah’s birth, we have learned a great deal more about heart disease, about how to live day by day with a chronically-ill child, and the value that play therapy has in overcoming hospital trauma. Because of our experiences with Anavah and interactions with countless other children and families we have met along the way, we decided to try and make a difference. We truly believe that there is always hope, even in the darkest of situations.
Bears for Hope is a nonprofit organization that seeks to be a resource to children and parents going through similar medical journeys. We hope you will catch our vision and join with us in bringing hope to others.
--Julie Viselli, Founder and Director of Bears for Hope