Lorena, a Venezuelan native who is the proud mother of three-year-old Miranda, suffered four miscarriages before becoming a mother due to a blood clot disorder. When she finally became pregnant with Miranda, her excitement was paused at her 20-week appointment at her perinatologist’s office. It was at this appointment where she learned that something was wrong with Miranda’s heart. “They couldn’t tell us what specifically was wrong, but that it was serious,” says Lorena. “After everything we had been through, it was devastating to hear this news.”
Lorena and her husband Daniel were then referred to Sibley Heart Center Cardiology to get an echocardiogram (echo) of Miranda’s heart. At this appointment, doctors confirmed that Miranda has hypoplastic right heart syndrome (tricuspid atresia), transposition of the great arteries (D-TGA) and a ventricular septal defect. This complex diagnosis led to close monitoring of Miranda for the rest of the pregnancy and prepared her for the surgeries she would need.
When Miranda was born January 18, 2016, she only weighed five pounds, five ounces at 40 weeks. She was immediately taken to the intensive care unit and stayed there for her first 18 days. She was only home for a few days before being readmitted to the hospital for heart failure.
Miranda was still in the hospital when she turned four weeks old, and cardiologists decided it was time for her to have her first open heart surgery, which was adding a pulmonary band to restrict extra blood from her going to her lungs. Miranda went through with the operation (which was performed by Dr. Kanter) and remained in recovery for 21 days. After a couple of setbacks, she was sent home and Lorena’s and Daniel’s goal was to get her to a good weight before her next surgery. At six months old, Miranda was ready for the Glenn procedure, which was the second of the three surgeries she needed to receive.
After six days in recovery at the hospital, she returned home with her parents and fully recovered. “We were told after the Glenn surgery that she would be a lot different (in a good way), and it was so true. She was so much stronger than she had ever been,” says Lorena.
Today, Miranda is due to have the Fontan procedure in the next two to three years, which is the third surgery she would need. For now, Miranda is enjoying life just like any other toddler. “She’s super sassy but loves to cuddle and sing. You would never guess that she went through what she did.” Lorena says. “It’s remarkable how resilient she is.”
We are extremely lucky to be in Georgia and have Sibley,” says Lorena. The first Sibley Heart Center Cardiology doctor they met was Dr. Glen Iannucci, who then recommended them to Miranda’s current cardiologist, Dr. Cyrus Samai. “He’s wonderful. Not only does he answer any questions I have, but he’s allowed me to be a part of Miranda’s journey,” Lorena says.
The same theme can be echoed by Dr. Samai, as well. “Miranda’s family is wonderful. They are so invested in the health of their daughter and have taken the initiative to become advocates for children with CHD.”
Lorena says that through this experience with Miranda, she believes she’s found her calling of spreading CHD awareness to the community and all of Georgia. “This has become my purpose in life; not just for Miranda, but for all children and families going through a similar situation as I did.” With a background in non-profit work, Lorena is naturally in her comfort zone when volunteering her time for CHD awareness.
Children’s Healthcare of Atlanta invited Lorena to be a part of the Parents Advisory Council for Cardiac Kids. This council meets to discuss how parents can have a better experience while at the hospital. “For me, the key for CHD is research, which is why I reached out to The Children’s Heart Foundation to see how I can help.” She is currently the Vice President of the Board of Directors at The Children’s Heart Foundation – Georgia Chapter.
When Miranda was in the hospital, Lorena learned more about Kids at Heart and their Feed the Heart program, which provides meals for cardiac patients and their families during long hospital stays. Lorena and Daniel joined these programs to support other parents like them. “I want to offer support anyway I can,” expresses Lorena. February 12 is Miranda’s heartiversary, the date she had her first heart surgery. Every year on this date, they bring in dinner and handmade embroidered gifts to the families in the hospital.
For parents who have a child with CHD, Lorena has these words of wisdom: “It’s going to be difficult and the first year may be very hard, but your kid is going to show you the meaning of strength.”