Day 22 of 30 Days of Gratitude: I am grateful for Dr. Levine

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. 

Day 21 of 30 Days of Gratitude: I am grateful, grateful, grateful for Dr. Emani and his incredible skill to give Isabelle a ‘perfect repair’.

From the first time I shook his hand I knew that this man was going to be our surgeon. The mere fact that he called my husband back after he left a message with Dr. Emani’s admin that he wanted to make an appointment for us to talk about him possibly doing her surgery- that SAME DAY- amazed me. We met him and as he went over the various scenerios, he was very confident in the images he had seen of the echocardiograms that it would go well. He encouraged us to ask questions and of course (thanks to my Heart Mamas) I had a few. What are the chances for chylous effusions? Do you clip one of the sinus nodes? Could that affect her rhythm? I was told she had good rhythym and NO ONE was messing with her rhythym. 

He backed me up in the CICU when I told the attending I wanted her extubated after she was breathing room air. I knew that the odds of her having an oral aversion were high and would only get higher if they kept that tube in. The opinion was “Why not keep in a few days? She’s having surgery on Monday.” Me, “Get it out, I want it out.” Dr. Emani: “There’s no need for her to be intubated, we have a few days and I am comfortable with it coming out.” Attending: 0, Me: 1. 

The day of her Norwood was the most emotional day of my life. I knew about the preparation, that she was going to be on bypass and that her aortic arch had to be reconstructed. I knew the shunt would be put in. What I didn’t know is whether her heart would start beating after being ‘shut-off’ momentarily. I wasn’t feeling well almost a week out from the C-section and I saw Dr. Emani as I was leaving the restroom. I knew he was coming to talk to us so I practically ran him over trying to get into the family waiting room. He took us into the consultation area and  apologized for taking so long. I’m sorry, what was that?

Apparently her arch was so small, he had to create a new one. Technically, she has two arches like McDonalds but only one of them works. He explained that it took a while for it to be stitched correctly and then went on to go over details of the surgery. He told us he used a Sano shunt and how he used a newer way to attach it to the heart muscle without causing too much damage. Went on to explain the conduit, and why he chose the size he did. He was very pleased with how well everything started back up again and was able to close her chest. I asked him what size her arch was, because I had seen research that suggested a tiny arch didn’t have great outcomes. “She had the smallest aortic arch I have ever seen.” Alrighty then.

He then went on to say he found something that he didn’t expect while he was in there. There was some tissue in the wrong place cutting off her subclavian artery. Basically she had some duct tissue cutting off the artery that feeds the left arm. He could have left it alone but one of the side effects is having one arm longer than the other.  He decided that he would just create a new section of artery and fixed it up. The surgery took a total of 5 hours. I was expecting more like 8. And this guy is apologizing to us for taking too long. Really?

Our cardiologist is one of a few who read echoes for patients. She couldn’t wait to tell us how incredibly perfect Isabelle’s repair was. She had never seen a repair that was as well done as that one. Other doctors have said that to us too, but I was stunned to hear that from someone who reads echoes all day. Every time we had a clinic visit, Chris and I would hear how great her heart sounded. Now our job was to fatten her up. 

When it came time for her second surgery, we had an informal meeting by her bedside about the next steps. She would have a cath, and then we would schedule the surgery. Her cath was incredible. Seeing her heart illuminated as the dye ran through was magical. I wish I had images from it. Dr. Emani thought they looked great and she had a few collateral vessles but nothing major. We were good to go.

Once again I handed her over to him and once again she came back to us. Her shunt was taken down, various pipes were attached to other pipes, and now all we had to do was to recover and go home. We were out of the CICU the next day and went home after a week. Everyone was happy with how everything looked and we couldn’t wait to go home and start living. After a few days home we noticed a red bump on the base of her incision. Long story short, we ended up at the ER with a staph infection in her incision. 

When I saw Dr. Emani this time he was standing by her bedside shaking his head. He was upset at himself for not remembering that her body doesn’t like the dissolvable stitches that he used both on her Norwood and then on the Glenn. He promised he would fix her scar when he did the Fontan. He wanted to see everything to make sure she was healing. He knew everything that was going on. We ended up going home and then coming back after a night of profusely vomiting. Turned out she was having a reaction to the antibiotic. Were we ever going home? This is the moment, by the way, when I began to wonder if we were going to be able to  leave. 

We did, and since that time we have been in for a PEG removal and Mic-Key button placed. We have had a tear duct opened and her neurological development assessed. When I saw Dr. Emani walk into the cafeteria, you KNOW I had to talk to him. I drive my husband nuts. He calls me an ‘Emani Groupie’. Yeah. I admit it. I am enthralled with the man who saved our daughter’s life and gave her such an incredible chance at life. When I brought Isabelle over to see him today, she gave him a big smile and he was thrilled with how great she looked. He asked me how everything went the other day. I was thinking maybe he was referring to her tear duct surgery. Nope. He knew about her cardio-neurodevelopment assessment and wanted to know how she did. The man knows everything about his patients and is concerned enough to ask. Love it. I said to him “I don’t know what you did in there, but she has more energy than I could have imagined!” He laughed and said “Good! That’s good!” It is good, and we owe it all to him. 

When you are first told that your child needs surgical intervention in order to live, once you get over the shock, you want the best surgeon doing that surgical intervention. When I am told by numerous people how great Isabelle looks, how pink she looks, I know that he is responsible. One of the esteemed cardiologists on the floor enjoyed using her as a teaching moment. She pointed out to the med students how difficult it was to see her cyanosis. When I asked her why that was she said to me “That is what happens when you get a perfect repair.” 

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Successful snapshot of Isabelle’s happy personality!

Thank you, Dr. Ram Emani. Dr. ‘MacGuyver’. You have given us a child with boundless energy, a matching smile to that energy, and a chance to enjoy a relatively normal life. She can walk. She tries to run, we aren’t there yet. She goes up the stairs and down the stairs. She would do that all day if I let her. Isabelle is thriving in a way we didn’t expect, but are so grateful for. LHS