In my case the majority of my now close friends are ladies I had never met. Woman from across the U.S, dealing with the same day to day struggles as I am with my CHD baby.
Our journey has been a long one, with many ups and downs and these woman have been there since the beginning. There have also been a select group that have sought me out and have found common ground in fighting for the same cause as I have been since leaving our local hospital.
When I became a heart mom I vowed to spread CHD awareness, I didn't want another family to find out about their little ones defect right after birth like so many I know have, or to find out in utero like we did and know so little. But as life would have it, my journey once again changed when we found out our local hospital that was caring for our delicate baby was with-holding valuable information from us. I put my full trust into a facility that I thought was plenty capable of caring for my child because I knew no better. I was told to trust them they "have seen this many times". I asked for rates, statistics, numbers to go by to better understand their success rates of caring for children like my son. And in turn was given text book numbers and answers. Still blindsided by our sons diognosis we went along hesitantly. But after many complications, infections and a good friends CHD baby passing questions arose as to if we were in the right place.
Honestly those questions crossed my mind many times during and before our stay. Especially when I found the U.S list of top pediatric cardiothoracic centers, and our local center was no where on that 1-50.
December 3rd 2012 we found out our center had stopped their heart surgery program, it was also the day we found out our baby was in possible heart failure. Imagine the surprise it would give a parent, especially one who put all of their trust into a facility that they were giving the best care for their child. Not only was my child sick but my heart was crushed and I was angry with so many people. The hospital for not giving us this information, especially since they had decided to stop the program in october and instead of moving our "to complicated" child, they allowed him to sit in the PICU. I was mad at myself for putting my trust into someone. I am his advocate, his voice, his main lifeline, and I didn't get to stand up for him. And I was furious again for not being given the chance to stand up or given the chance to make the right choices for my son.
Online I found peace in woman fighting this same battle and I found there was a name for it. Transparency!! I didn't know at the time but I had already started my journey for fighting for transparency when I publicly spoke about our local hospital to a reporter. My fight began and a passion grew inside of me like nothing ever had.
Through my life I had always wanted to be something special, never felt like I was. I wanted to do something worth a damn. I never found that connection, came close to it when starting my career in the medical field. I never felt my true calling and pride in what I was doing until doors began to open in this fight for transparency.
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| On the set for CNN story, camera was waaay bigger than waylon. |
We did a story months ago with CNN and I was asked to find other families to share their story, some where hesitant and some just plain said we cant do it. I didnt give up and I was happy to find two families willing to put it all out there with us even knowing that we would get backlash from people for it. And we did, slowly people began distancing themselves from us, some of which I considered to be like family. But this fight meant so much more and it only showed me who truly cares about not only my family but the many others affected through the U.S. I was hell bent and determined to fight for this and I have found many other woman willing to do the same.
Recently I was able to attend the National Pediatric Cardiology Quality Improvement Collaborative. For months after learning about it I tried to find every way in the world to get a way there. After persistence and some wonderful friends I was sent to the lead coordinator for the entire thing who I sent a link to the CNN story and our local news stories, along with the online petition I had started against our local hospital to release numbers. This collaboration is meant to pull healthcare teams and parents of HLHS together to find new ways to improve their care and help them to survive longer during interstage (the months between the first and second surgery home). While my son never made it home during this time I felt I could provide many things to this, along with my fight for transparency. Not to mention I would get to meet some of the people I speak to daily online and the teams of the hospitals I read about who have cared so greatly for waylon's CHD siblings.
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| making it to ohio for the collaboration |
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| My traveling buddy, he couldn't stay home, was the only baby there! |
Going in I had no idea what to expect. Warmly welcomed and set down at the Michigan table I listened contently about ways to improve feeding, weight gain etc for future kids. Ways to work on getting parents to stay on top of the daily weighing,checking of oxygen saturations and calling them in to their team back at the hospital. I was in ah of the room full of dedicated people putting their best foot forward to improving babies lives during this crucial time.
Most of these teams I had never met but knew so much about from the numerous posts I read from other heart parents about the "miracle" work they had done to save their children, the articles I read about their facilities new techniques for the 3 stage surgeries etc etc.
Time went on and discussion soon made its way to the topic I was ready for. I could see the division of the centers when a Dr. whose specialty is cystic fibrosis spoke about her fight for this very same thing (the article about this was given to us in email prior, and let me just say I cried while reading it, so much hope). But her take was a little different. She felt centers should open up to eachother first about their numbers and rates before making it public, in an effort to better themselves first. It struck me as she continued and I seen the wonderful lady who made it possible for me to even be there motioning for me to take a mike and speak out. It took no pressure for me to make this choice because I felt a parents perspective needed to be said.
"Why did all of you in this room choose the profession you chose?!!?" I led my rebutle with this. Stunned faces looking at eachother and I seen some nods throughout the room who understood exactly where I was going with this. You chose your specific profession to save lives, not for a certain facility, to put their lives above anything else, just as parents have. Parents know more about the things going on than what you would expect and they are more involved in their childrens care than what you may think or see. These numbers of your facilities need to be made public so parents can know just how your center is performing and they can make the best decisions for them. You have to also ask yourselves if your family was hit by this defect would you take your child to your center, or somewhere else, and if not your center why not, what needs to change at your center/how can you change it. I went on about parents fighting for numbers and how I had done this very thing with our local hospital in an effort to make local parents more aware so they could make the right decisions for their children and how if the numbers didn't come out there would be more of this happen throughout other centers with other parents because I wasnt stopping until they were released. How presumptuous and a bully I seemed, but it is all true words. Parents have to stand and fight for their kids to receive the best! Discussion began about a CNN story that had been seen and heard of and how this reporter was calling their centers for their numbers/rates. Many seemed scared throughout over this, and who wouldn't be if it was your facility and a public figure with many followers was calling your facility asking for this! Especially if you are a center that knows things need to change and your number on mortality rate is high. Again from across the room I see the coordinator,Kay, motioning for me to speak again.
But what followed I don't think anyone expected, not even myself! " I am the mom from the CNN story" gasps filled the room as people began standing up to see where this claim was coming from (I had to sit, rocking a baby and publicly speaking doesnt work well standing up!). I told them how I petitioned for our local hospital to release numbers and how I will continue to do so. My child came from a hospital who didnt even have a heart center for their heart patients, and that the time line they were speaking of it taking to get their facilities "up to par" was to long for children sitting in "crappy" facilities who don't have their stuff together and need alot of work. Its not fair for them to sit there unknowingly when there is another center that could take them on and care for them. We werent given the choice of this until the center shut down and my son was in heart failure, because of his insurance we were told we had to go to this local hospital who was not equipped to care for him, and yet they not only took his case on, but kept him there even after they knew they couldn't care for him.
My chest pounded, not from fear, but relief because I got to stand up and tell the story of my child and the many others like him who arent being given the chances they deserve in centers unequipped for them, something needs to change. I was honestly a bit afraid of what some would say after but was met with open arms by not only my fellow heart moms thanking me for saying these things to these people and stating that I was the person their facilities were likely fearing but by different hospital staff telling me how proud they were that someone was standing up, and thanking me for doing this because their centers didn't want to release until they received that call from Elizabeth Cohen (lovely woman might I add). And the one that got to me the most was a staff member telling me excitedly thank you for saying those things, we had heard about the CNN thing and pushed our board to release numbers and they were so hesitant, even though our numbers are awesome, and as soon as we got that call we released our numbers the next day! "We didn't know if you truly existed, we thought you were some kind of made up urban legend, and now I can go back and tell them , yeah I met that mom, shes real!!"
All in all it was a wonderful experience and I can't wait until my next oppurtunity comes along. Meeting these heart moms was like meeting long lost sisters for the first time, was an unforgettable experience. I am so humbled by the many thank you's I receive for the work I am doing. I am far from a saint, and I am not alone in this fight. I have heart families backing me daily, and some standing right beside me. I also have heart centers backing me passing along the word to continue this fight because they whole heartedly believe this needs to be done!
I was so happy to be able to meet these woman I felt so connected to yet had never seen in person until now. I cant wait until the next time we get to work together on something. And I am so gracious for the hard work the coordinator and Motts childrens hospital did to get me to that collaborative giving me the oppurtunity of giving parents a voice. The work in that room that day was life changing and I would recommend it to any hlhs parent to try and make it next year, your voices and experiences need to be heard.
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