Leaving Nothing On The Field
What does it mean to fight? To advocate? To challenge? In any moment, with any situation it means that at every turn you seek out the best questions, the best answers, and the best people to help you through the journey of life. I have watched so many people “fight” for so many things. A team I love competing for the win in the big game, a dear friend with life-threatening cancer doing everything she can to find new answers to hard questions, countless people fighting (and winning) their battle against mental illness, sorority women and fraternity men doing everything they can to change their organizations, my wonderful employer striving to build a company of integrity and honor, and my sweet husband going to work everyday to support our family. Of course I have also watched our son Paul fight through the countless challenges that come from having HLHS. To me fighting and advocating and challenging mean leaving nothing on the field- knowing that you have done everything with your every fiber to accomplish whatever goal…We have been given a fight in the ring with HLHS and quite frankly he’s a tough opponent. I believe that our responsibility is to love Paul for as long as his life may be. I know it is our job as Paul’s parents to give him the best chance at a long and happy life.
Part of our job as parents is to know the latest ways in which the top children’s hospitals are treating HLHS. In that, we had Paul evaluated at Boston Children’s Hospital for a new procedure called a biventricular repair. We also asked BCH to weigh in on Paul’s course thus far and give additional input. Boston is one of two top centers in the world for the treatment and management of congenital heart disease. On Friday, we received word that not only was Paul not a candidate for a bi-ventricular repair but there were some things going on in his heart that they deemed significantly concerning. Their sense was that his Tricuspid Valve regurgitation, heart function, and right ventricular enlargement were troublesome. They noted that while echocardiograms are a good measure of all of these things an MRI can give a much more accurate picture and that is what they recommended we do with Paul. There are ways in which all of these things can be managed if they are, in fact, as much of a problem as Boston thinks they are. Hearts are scary, things can look ok on the outside and not be ok on the inside. While right now Paul is doing great, if his heart is compromised in the way they think, it will cause a problem later. This needs to be addressed and that is precisely what we are going to do.
We have made contact with our team at Vanderbilt and shared the BCH findings with our cardiology fellow. She, our magnificent nurse and Dr. Parra have been following Paul since day one. They will discuss the findings on Monday and meet with us via phone Monday afternoon to craft a plan. It does not matter why they have not found things as concerning as BCH or what has happened with Paul’s heart up until this point- the fact is we have one of the best surgeon’s in the world telling us something may be wrong and we take that very seriously.
We have also made contact with the Children’s Hospital of Philadelphia, one of the other leading centers in the treatment of HLHS. They have not yet weighed in on the echo readings but we hope we will be able to share the images with them and that they will share their thoughts with us next week. We had planned a visit to CHOP this Spring for another pair of eyes on Paul and to discuss his third surgery with them and to learn more about their Single Ventricle Survivorship Program- where they are successfully managing teens and even adults with HLHS. Our hope is that we will push that visit up and have CHOP intervene as they see necessary.
Obviously this information is disheartening and challenging and anxious making. We are grateful for our current team and are grateful that there are so many people out there pulling for Paul. We are also grateful that there are children’s hospitals to manage and treat HLHS. We all have to remember that this disease has only been survivable for 30 years and the management of these children continues to evolve almost everyday. So, we will talk with our team on Monday and have more answers. The good news is that Paul is a happy almost one year old boy! He is starting to walk with assistance, he bounces around and plays every chance he gets, feeding is progressing, and his little sweet personality shines through him like a beam of light. To know Paul is to love him. He deserves every chance at life and that is why we are leaving nothing on the field.
Ps. Paul LOVED Thanksgiving and ate sweet potatoes, mashed potatoes, stuffing and green beans- DELCIOUS! We are thankful for him and for all of you!