We met Dr. Levine on March 6, 2012. We had just been told that our baby had a severe defect, and that we needed an appointment at the Advanced Fetal Care center at Children’s for an echocardiogram. The first person we met at the center was the social worker. She went over the general procedure of delivery, preparation and surgery. We were asked if we had any questions and I had no idea what I wanted to ask about.
The tech doing the echo was not gentle. It was very uncomfortable and the baby pushed back whenever the tech pressed very hard against my belly. The heart was so small it was hard to get a picture, but soon in became apparent that something wasn’t right. I had to move into various positions for better views and none relieved the pressure I was feeling from the inside out. After being tortured for about 45 minutes, a woman with long curly hair, glasses and wearing a white coat came in. She introduced herself and began getting images for herself, relieving the tortuous tech. I liked her immediately because she didn’t need to press hard to get the images we needed.
Dr. Levine confirmed that the baby did indeed have Hypoplastic Left Heart Syndrome. She drew us a picture of a healthy heart, and then one similar to our babies. She explained the three surgical procedures of the Fontan Sequence. She tells the survival percentages and what the odds were. I asked about a transplant and was told that BCH likes them to try to keep their original anatomy for as long as possible, especially since newborn hearts are really tough to find.
She told us about some of her Fontan patients who did sports activities and how these children seem to limit themselves. She told us about the recovery times of each procedure, mentioning that the Norwood had the toughest recovery but the survival rate at Boston was 80%. She told me to stay away from Google, and to look up Little Hearts, Mended Hearts and CHOP website if I needed more information.
We left Boston feeling better about the outcomes and we saw her a few more times before Isabelle’s arrival. I had become connected to a few heart groups, such as Sisters-By-Heart and Heart Mamas. I would come to each visit with lists of questions about possible complications. Dr. Levine answered every one of them, and if she didn’t know something at that moment, she would call me later with the answer. We planned everything for the second week of August. She was going on vacation the week after but wanted to be around when she went into surgery.
Isabelle had her incredible Norwood and we saw Dr. Levine almost every day. She would make a point to stop by regardless of what her day looked like. She answered my phone calls full of questions about sats, arterial lines and feeding issues. While she was away, she had one of her most trusted colleagues be available to us.
During the Interstage process, I called her a lot. I called when Isabelle didn’t take in very much and I called when she did. I called about how many calories she should be taking, whether or not I should feed her past the 30 minute mark and whether her sats were in the OK range. One day I called and didn’t like how she looked. That’s all I needed to say. They were waiting for us at the ER in Boston.
Dr. Levine has been with us from Day one. She has been supportive every conversation we have. She is always amazed at how well Isabelle looks, and how great she is doing. She is just as proud as we are of her accomplishments and loves getting the pics I text to her. I couldn’t have asked for a better cardiologist to care for our daughter.