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Wednesday, February 7, 2018

Heart Month Spotlight- Palmer Heterotaxy Syndrome

Happy Heart Month! 

Today's story comes from Robert, the father of a Heart Warrior Angel. In spreading awareness it is so important to share the stories of both the surviving CHDers and the warriors who gained their angel wings much too soon. Sweet Palmer's story is beautifully written but I must be honest, it may be hard for some to read. 


Palmer's diagnosis was Heterotaxy Syndrome with Dextrocardia (Heart Facing Backwards), AVSD (Single Ventricle), Pulmonary Atresia.  This was prior to his birth.  Once he was born, we immediately learned that he also had TAPVR and MAPCAs, as well as bi-lateral SVCs.
When did you find out?  We first learned of the Heterotaxy Diagnosis at week 12 during a routine sonogram for a genetics screening.  We had weekly Dr.'s visits, and monthly pediatric cardiologist visits.

We gave birth at Seton Main in Austin, TX on April 1st, 2017. Palmer was born at 2:03p.m.



Prior to his birth we were counseled by our Pediatric Cardiologists and Prenatal Dr.'s.  We were told that Palmer would be taken care of at Dell Children's in Austin, more than likely in the NICU.  We were told that although serious, his condition was something that Dell Children's could handle, and we were led to believe this was our best option.  We were never provided second opinions, even when we made suggestions, or asked if there were any recommendations.
  

Hospital life was frustrating.  We started at Dell Children's and the very first night, I, Robert was by myself with Palmer while Kristen was recovering at Seton. Palmer desated and stopped breathing for nearly 2-minutes.  The Dr.'s seemed so non-chalant afterwards, yet I was terrified, crying, and in a state of shock.  I didn't want to call and worry Kristen, but at the same time I felt so alone and helpless.  I put all of my trust in the Dr.'s.  We put all of our trust in the Dr.'s, and it wasn't until Day 6 that I realized the Dr.'s had their best interests in mind, not ours

The night of Day 5 we were told by our Surgeon and Cardiologist that Palmer would be having surgery the following morning (April 7th).  The surgeon discussed briefly what she would be doing and told us that she would treat Palmer as if it was her own daughter.  About an hour after this discussion, our Cardiologist returned to the room, by herself, and informed us that the surgery may or may not happen, that the surgeon spoke with one of her colleagues in Dallas and that they would all be having a conference in the morning to discuss Palmer's case.  The next morning we were led into a small room, myself, Kristen, and Kristen's mother, along with our cardiologist and surgeon.  I immediately knew something was wrong. It was at this time that the surgeon told us there was nothing they could do for Palmer, and that they recommended comfort care.  I had never heard this term before, but I knew what she was saying.  She was telling us that we had to give up on our son.  She was telling us that they were going to do nothing else.  She was telling us that we had to let our son die.  She tried to act like our marriage counselor and explain how she has seen this kind of thing tear families apart.  We didn't need a marriage counselor, we needed a surgeon.  We needed our son and his heart to be fixed.  We were forced with a decision.  I took control and chose to fight for our son.  I took the piece of paper that our surgeon used to deny our son a chance and I tracked down Dr. Hanley in Stanford.  Within 30 minutes I had Dr. Hanley on the phone, just as he was going into the OR.  I spoke with him for nearly 30 minutes and he agreed, based on the information that I had faxed to his office, to accept Palmer.  In between waiting for Dr. Hanley to call me back, I had received a call from Dr. Frasier at TCH.  Our cardiologist had previously mentioned that she knew him and I had asked her that morning to call him, after being told there was nothing Dell Children's could, or would do.  Dr. Frasier called me on his way to the airport and very candidly expressed to me the severity of the situation from his viewpoint.  I would have one more conversation with Dr. Hanley, along with our cardiologist, and one more conversation with Dr. Frasier before finally deciding on TCH.  So much happened during a three hour period, and I am leaving so much out, but this is the gist of it.  We had to get our son the help he needed.  Dell Children's led us to believe that they could help, only to pull the rug out from under us, giving us no real options, and leaving us to fend for ourselves.  That evening, Friday, April 7th, Palmer and I took a jet ride to Houston, along with two ambulance rides.


 

We stayed at Dell Children's for almost 6 days.  We stayed at TCH for 41 days.

Palmer had a 21-hour open heart surgery on Day 9 of his life at Texas Children's Hospital.

Palmer never recovered from his surgery.  He had a major Pulmonary Hemorrhage while in surgery and was placed on open chest VA ECMO.  Palmer spent 37-days on open chest, VA ECMO.  The Dr.'s attempted to get him onto VV ECMO after 7 days, but because of the anatomy of his heart, primarily his bi-lateral SVC's, they could not get the cannula through his left SVC and therefore had to keep him on the open chest VA ECMO.  Immediately following this attempt, Palmer had some complications and bleeding, which resulted in additional bedside procedures to prevent further bleeding.  Because he was on ECMO and the risk of clotting and bleeding was so high, it was a constant battle to balance his blood thinners.  He had his ECMO circuit changed seven times in the first two weeks, and over 10 times in total over the 37-days on ECMO.

We obviously had a lot of appointments prior to his birth, and he was obviously on a lot of medications when he was in the hospital.  I joked with the Chaplain on the day we let Palmer pass, saying that I hoped they had rehab in Heaven.

 

Palmer was/is our first and only child.  We have a dog, but she was being cared for by a friend in Austin.  We own our own sauce and spice company, as well as catering company in Austin.  We had to cancel all of our catering jobs, and thankfully my best friend, who was watching Sasha, was able to help with my sauce and spice business while we were away. We also received a lot of support from friends and family in Texas, as well as from my family back in NY.  My family and friends back home set-up multiple fundraisers to raise money to help us cover bills and costs while in the hospital.

 Life now is different.  I can't speak for Kristen, but I know that my perspective on life has completely changed.  Some days are easier than others, but I find myself angry and frustrated quite often.  I try not to be.  I try to be strong for Kristen.  I try to be strong for Palmer and his memory.  I made many promises to Palmer when we were alone in the hospital.  I promised that people would know his name.  I promised that I would honor him and build his legacy.  I promised that he would matter. And through this, through all of his pain and struggles, that he would not be forgotten, and that all of this would not have been for nothing.  I find myself having a hard time relating to people and their "problems".  My life and my view on life will never be the same.  This is something I am coming to terms with.  The biggest thing that continues to push me forward is the chance to honor Palmer.  

I want to be able to share my story with families that are being diagnosed with similar conditions.  I want to be able to help them avoid the pitfalls and roadblocks that we ran into.  I want to help get them to the right place and avoid the unfortunate human condition that is pride.  I want them to realize that Dr.'s are people, they are prideful, and that hospitals are a business.  I don't want to scare them per-say, but I do want them to realize the severity of the situation, and I don't want them to wake up one morning and realize they didn't do everything in their power to give their child the best opportunity to survive.  I want to slowly change the way hospitals view patients as potential economic opportunities, ideally setting up a second opinion system requiring hospitals to automatically refer a severe case such as Palmer's to a hospital(s) better equipped to handle such conditions.

I am starting a foundation in Palmer's honor.  HeartStrong was created while at Dell Children's.  I had the idea and scribbled some drawings down on a notepad in his hospital room.  Those drawings turned into a logo, which turned into t-shirts, which on April 1st of 2018, on the 1st anniversary of Palmer's birth, will turn into HeartStrong's first event, an Easter lunch at TCH.  Kristen and I plan to work with the Ronald McDonald House to cook an Easter Lunch at feed the families on the 18th and 15th floors of the hospital.  We hope to then do the 1st Annual HeartStrong Charity Golf Tournament in May of 2018.  I have opened the dialogue with the Palliative Care Team at TCH, and it is our goal to have HeartStrong partner with their team to help provide support to families facing these terrible conditions and situations.  We don't know what it will turn into, but I am committed to building HeartStrong into something Palmer would be proud of.  The thought of this is the truest joy I have in life.


I definitely have a lot more that can be said, but I know I have already written a lot.  I do want to be able to connect with other families that have experienced a loss like us, but understand that not everyone copes in the same manner.  I just want to express that I am always here for anyone that needs to talk.  I don't see a lot of father's on the Facebook groups talking.  I know that I am perhaps more open than most men about my feelings and my loss, but I know that there are plenty of father's that are hurting in their own way, and I just want them to know that they have someone to talk to. 

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Reach Robert by e-mail: robert.strong@ptfawg.com