Home Turf

Over the past few days I have been witnessing people at their worst. People who are making assumptions without knowing the facts, and people who are blindly posting their ignorance in response to a public statement made by Boston Children’s Hospital on the recent Pelletier case. Even Beck, in all his funky glory, has weighed in on the conversation. He claims to know the story, yet still believes this girl is at BCH. She is not. I don’t know where she is but I do know the hospital is no longer ‘holding her prisoner’.

She has become a ward of the state because of evidence that none of us other than the defense and the prosecution saw. Her parents are riling up the general public in hopes for support. They claim she was kidnapped and that they lost their parental rights to her and her care. All the claims make Boston Children’s responsible. My question is, responsible for what? For acting on their conscience and reporting something they felt strongly about? For taking on a liability as expensive as getting the state involved in this situation and taking a child away from her family because they felt it was for her own protection? Here is what people don’t understand- it takes a lot of evidence for a child to be taken like this. A lot of evidence none of us has seen. If it comes out that these conspirators are correct than by all means, serve me a crow on a plate sunny-side up.

Both sides of this have not been presented because of the gag order that apparently, not everyone paid attention to, including Mr. Pelletier himself. Claiming her life is in danger, he is breaking his ‘silence’ on what is going on. The support he is getting is ridiculous. People have been posting about how they themselves lost control over their loved ones’ care at hospitals, about how BCH is like Auschwitz, and how they should storm the hospital to free her themselves. Here’s the thing: for every procedure that was done to Isabelle, we had to sign consent forms. Staff went through what we were signing with us. We never felt coerced to do anything we didn’t feel was in her best interest. I have copies of the forms in a folder that is 2 inches thick. We signed consent for everything they did. Everything. There is absolutely NO WAY I could ever claim that I didn’t know what I was signing. No way.

So I don’t believe these people. I don’t believe that they are 100% innocent bystanders while the nurses and doctors ‘chained’ their daughter to her bed. I don’t believe that she has mitochondrial disease on the grounds that if she did, they would have found it when they were covering their bases for this case. I don’t believe a doctor’s ego has the power to make decisions against a family’s wishes. It didn’t happen to us because I have learned to be my daughter’s best advocate. I have learned to speak up in a way (ok, not all the time.) that allows me to be heard during rounds, tell the staff things like “no vitals, she needs to sleep” and not have Dept of Child Protective Services at my doorstep. It didn’t happen to us. I can be pretty aggressive when a primal instinct like protecting my daughter is set off but not once did anyone at BCH say to me “You need to leave.” Ok, maybe our NP did tell me that but it was in the interest of me getting rest so I would be able to handle the challenges that lay ahead. And she was looking out for her nurses.

The way I feel about Boston Children’s is kind of how I feel about my high school. Let me explain.

I have had a lot of mixed experiences in high school, some great and some not so great. I have had to endure some hard times, loneliness and feeling like it was never going to end. I also felt joy, made some incredible friends, and have a sentimental connection to all who have been there. At Plymouth North, I walked through my own personal fires and I carry those experiences with me. I feel passionate about both places because they are my home turf. Places where I had gone through intense emotional growth. I had my heart broken in these places. I had it put back together. I met incredible people with whom I would run into a burning building for. When I used to go to the old high school, as broken as it was, it was still where I spent 4 years of my life day in and day out. A piece of my life was in those walls. Same with BCH. We have spent many days in those halls, rooms, labs, and offices. We have gone through such great emotional upheavals in those halls. And it isn’t over yet.

Yesterday Izzie was having a blast singing “Twinkle Twinkle Little Star”. She was singing it when her new GI doctor came into the room. He smiled and began singing it with her. I thought to myself “I love this guy. He gets it. He knows she has been through a lot, and wants her to be comfortable.” It was our first appointment with him and I am so grateful we have another incredible experience to add to our collection. BCH gave me that experience. It gave me a beautiful daughter who loves her family and enjoys life in a way I can’t describe. She is a blessing that we weren’t sure we would have. I will never turn my back on the place that gave her to us. The place that showed us how to take care of her, how to help her thrive. A place that will keep her heart beating and that respects us as parents.

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.