Story of the Month
My name is Anna Andreevna Selina. I am the mother of a wonderful six-year-old daughter, Selina Karina. Karina was born with a congenital heart defect that meant she only had one working ventricle in her heart. She was only 19 days old when she underwent the first of four open-heart surgeries at the Research Institute of Cardiology in Tomsk, Russia. The last operation was performed when she was nearly 3 and a half years old.
Then, 3 months after that operation, another serious problem surfaced. Karina’s lungs filled with fluid and she coughed up a whitish, rubbery shape that looked like the branches of a tree — an image of the airways inside her lung. Doctors called it a bronchial cast. We live in the outback of Russia, in the Republic of Khakassia in Siberia. At that time, none of the doctors in our region could explain to us why this was happening. All kinds of emergency tests and examinations were done, but there was no definite explanation of Karina’s condition. With the help of the Internet, I found out the cause and the answer and I contacted the cardio center where Karina had her surgery for confirmation: “plastic bronchitis.” Karina would need to have the condition corrected — and before she could get a final needed operation to close the opening the surgeons had made in the last step of her cardiac surgeries. I was then told the words no mother ever wants to hear: “In Russia, no one can help you. This disease is incurable.”
During the following year, we searched for various clinics, including abroad. Karina's condition only worsened. Her state of health reached the point that she had to lie down with an oxygen concentrator for three days and couldn’t cough up these large bronchial casts. Pulmonary treatment could not alleviate her condition or help her to cough them up. Twice the cast completely blocked lungs so much she couldn’t breathe at all. We were urgently taken to the hospital by ambulance, but the doctors were powerless. She had to look for strength in herself and cough it all up herself. Once in a correspondence in an online social group of mothers of children with a similar heart defect, a mother – whose child also has the same disease – responded. Together, we found Nemours/Alfred I. duPont Hospital for Children in Delaware and Dr. Maxim Itkin, who has been successfully operating on this type of disease for years.
With the help of Nemours Global Health and a charitable foundation, our family raised the funds needed to fly to Delaware and have the necessary procedure. We flew to Germany and then on to New York just as Germany’s borders were closing due to the worldwide COVID-19 pandemic. We made it to Delaware just as the hospital was cancelling many visits and procedures. Fortunately, Dr. Itkin and Dr. Deborah Rabinowitz were able to perform the planned procedure.
The doctors were able to close 90% of the abnormal lymphatic ducts that were causing Karina’s lungs to fill. She slowly recovered and I finally felt some relief from constant years of worry. When the swelling lessened and her condition improved enough, the doctors performed a second procedure to completely close the chest lymphatic ducts. A week later, Karina was discharged and we were able to get the last possible flight — as the pandemic worsened — to return Russian citizens from New York to Moscow!
Before the operation, the light in her eyes was dying out every day, and she was losing the will and strength to fight for her life. Now, after the lymphatic procedures, the shine in her eyes suggests that she is full of strength, energy, and the desire to live and enjoy every day. We are infinitely grateful from the bottom of our hearts to the management, staff and surgeons at duPont Hospital for their efforts, skill and desire to help us. It was just a miracle for us that our daughter could receive this life-saving treatment.