Hello, our daughter Birdie has a rare congenital heart defect called parachute mitral valve with severe regurgitation. It was discovered when we were in the NICU for jaundice, which turned our stay at the hospital to an extended one. Birdie has already had 2 week long stays in the NICU and a 5 day stay at the PICU. We see the cardiologist weekly and are currently on 3 different medications to manage the symptoms of her heart condition. We had a meeting with a pediatric heart surgeon in Austin, and the news from them were pessimistic and grim, with the cardiologist saying that working on Birdie’s heart would be like doing surgery on “spider legs”. The surgeon suggested we look into taking her to Boston Children’s Hospital because they have a surgeon team that specializes in valve repair and replacement. We worked with her cardiologist here (we love Dr. Banker) and started the process of a 2nd opinion with Boston.
I received an email with their opinion on Birdie’s condition and a week later a phone call from the surgeon himself. Dr. Baird is his name, and he stated that he felt confident in being able to take Birdie on as a patient and had a few options on surgery, depending on what is needed once everything was approved and she was evaluated by his team.
Right now we are waiting for the scheduling team to call for the surgery date, but it is looking like anywhere from July-September.
I’ve called and spoke with the Ronald McDonald House at Boston and unfortunately they have a bit of a wait, but once we get the schedule for surgery we can be placed on the waiting list.
This is an out of state and obviously out of network procedure being done, but this is the best option we have for Birdie and with the best team to perform it successfully in the nation.
I cant put into words the fear, anxiety, depression, despair, and sickness that we have been filled with since discovering Birdie’s condition. She is such a beautiful and special girl and I wish more than anything that I could change places with her.
If you’re able to donate to help with the costs of travel to Boston, lodging, and medical bills, it would be greatly appreciated. If you’re not able to, please keep Birdie in your prayers and send us all the positive thoughts you can spare.
Thank you,
Hillary and Kaleb.
