Our twins Mia and Luna were born near a month premature at 2.7 kgs (5.9 lbs) (Read their birth story here). On the second day of life during a physical examination, our babies’ physician heard a ‘murmur’ in Luna’s heart. She was diagnosed with a Ventricular Septal Defect (VSD). My heart is carrying a heavy burden since.
What a VSD is?
Honestly, I was avoiding this topic all this time. I even told my husband not to tell me the name of it, not to stress myself even more. From Google (I promise, I was searching just a proper definition), VSD is a hole in the wall separating the two lower chambers of the heart. Normally, the left side of the heart only pumps blood to the body, and the heart’s right side only pumps blood to lungs. In a child with VSD, blood can travel across the hole from the left pumping chamber (left ventricle) to the right pumping chamber (right ventricle) and out into the lung arteries. If the VSD is large, the extra blood being pumped into the lung arteries makes the heart and lungs work harder and the lungs can become congested. (www.heart.org)
What are the symptoms of a ventricular septal defect?
A VSD permits extra blood to pass from the left ventricle through to the right side of the heart, and the right ventricle and lungs become overworked as a result. The larger the opening, the greater the amount of blood that passes through and overloads the right ventricle and lungs. Symptoms that Luna has include rapid and heavy breathing, fatigue and tiring while feeding. Probably we wouldn’t even notice these symptoms if her twin sister Mia wouldn’t grow more rapidly. They were born with completely identical weight and now, at almost three months they have a 600g (1.3 lbs) big difference.
One week ago we went to the pediatric cardiology department at Hôpital Necker in Paris for the pre-op appointment for Luna’s surgery. It was focused on the echocardiogram (ultrasound of the heart), blood tests and the most important- we met the surgeon who will do an open heart surgery to our baby. He explained what would happen during surgery as well as the risks. We were told that this surgery is an ‘easy’ one. On a scale from 1 to 11, it’s 5. I thought about writing about the details of the surgery but it may be disturbing for some of you.
The synopsis is that it’s an open heart surgery to repair a large hole in the heart. Her heart will be stopped and a machine will function as her heart and lungs. That what terrifies me the most as a mother. Even a talk with one of the best surgeons in Europe couldn’t comfort me and relieve my pain. Although I was assured that Luna will be in highly capable hands, the fact that a scalpel will touch my baby girl’s chest and her tiny heart will be stopped is breaking my heart in pieces. I’m angry. I’m terrified.
I have no idea how I will survive the day of the surgery. Why my baby? Why us? I won’t even be able to hold her in my arms after this nightmare will be finished. She will be all alone, drugged and hooked up to multiple tubes, drains, and machines. But I have no doubt she will be fine. As our cardiologist said: “You’re strong, but she is stronger,” and I truly believe in that. This will be the biggest battle in her, no, in our lives. I believe in her. Maybe one day she will be proud of her scar. Me, I will. I’m so proud of my tiny fighter. No doubts, she will be victorious!
I’m asking you for support. We need it more than ever. If you have experienced this in your family, please share your experience with us. Maybe there’s something we should know. Thank you!