Monday, April 15, 2013

Getting a 2nd Opinion: An Outpatient Perspective

We often hear heart moms asking whether or not they should seek a second opinion. Our response is always the same – even if your child is not critical, if you have any concerns about your child's care, yes, you should definitely seek out a second opinion. With complex CHDers, a second set of eyes never hurts.
In the next two blogposts, we’ll be sharing the stories of two families who sought  second opinions for their HLHS children.  First is Paxton and his mom, Jessica, who sought an outpatient second opinion leading her across the country for Pax’s Fontan surgery. Jessica shared with us some great insights about what the second opinion process is like when your child is outpatient and not-critical, and how to go about maintaining good relationships with your home care team during the transition.
Thank you, Jessica, for sharing your journey with us!
(Jessica and Paxton)
Almost six months ago I passed my three-year old son over to a surgical team for his lateral tunnel Fontan at Boston Children’s Hospital. What had started as an information-gathering opinion on my son’s complicated heart and pulmonary structure turned into a 1,800-mile trip from home to the team who has ultimately saved my son's own heart.
A few months prior, I sat listening in disbelief as our “home” cardiologist sprung it on me once again that we were possibly headed down the road of heart transplantation. It had been discussed off and on since Paxton was five days old. Despite having had a dozen heart procedures, many being emergencies, Paxton was thriving with half his heart and a compromised left lung. I asked myself, “How could a child doing so well need a new heart?”
That very day I felt a strong urge in my heart to seek another opinion. I knew I had one chance at my son’s life. It was so hard to tell the team who had saved my son’s life time and time again that I needed more. After all, they became part of our extended family. I apologized repeatedly, but his cardiologist reminded me that Paxton was his baby too, and that he also wanted the very best for him.
Were his feelings a little hurt? Yes. Was his pride a little less? Yes. Did he shed a tear or two as we were leaving? Yes. I truly think it was because he had been working to save Paxton for years. He knew his case well and the thought of someone new inside my son’s chest concerned him. Upon my request, every detail of Paxton’s history was sent to Boston Children’s Hospital for a second opinion.
A top cardiologist at Boston Children’s was selected to review Paxton’s extensive and complicated history. A few weeks later we received the report in the mail that concluded Paxton had received good care at his home hospital and that they would have done nothing differently with his treatment at Boston. That was so reassuring to me because I was not seeking a second opinion to find fault. We did and always will love our home team. But what came next in the report stirred my emotions as a mother of a fragile child whom we had fought so hard to save. A final recommendation of treatment could not be made unless Boston performed a heart cath on Paxton. The report gave me no clear answers. Did my son truly need a new heart? And would my son with a compromised left lung even be eligible for a heart? My heart ached for more answers from one of the very top heart teams in the country. I knew we had to make the trip from Missouri to Boston.
I was at peace the very moment my eyes looked at Boston Children’s Hospital. A sign ran across the entrance to the building that read “Ranked #1 – U.S. News & World Report.” At that moment I realized just how easy and worthwhile the process had been to get a second opinion. What once was just a dream of having my son treated at a top heart center had turned into reality. My fears of getting lost in the crowd at a large heart center were quickly erased. I felt as if my son was their only patient. I felt as if they loved my son even though they had just met him.
As hard as it is for me to admit, there is a difference between good heart centers and the BEST heart centers. The best heart centers have the collective experience to tackle the high-risk cases and are the ones researching new treatment plans that trickle down to smaller heart centers, like our home hospital.
After completing every heart test available, Paxton went in for his pre-Fontan cath. One of the very best interventional cardiologists in the world performed the procedure and advised us that Paxton was a candidate for the Fontan. It would be considered higher than average risk, but she believed it could be done. She advised against heart transplantation.
Paxton had been at risk of sudden catastrophic event since birth. Every procedure up to this point had been high risk when it came to our son. We were not afraid to proceed. The next decision was whether or not to have the surgery performed in Boston.
The fact that my son would have a Fontan to one and a half lungs made the decision to go to Boston easy. At Boston, a team of 75 of the best heart doctors in the world would be surrounding our son, discussing his complex anatomy.
Simply put, Boston offered us more hope and experience. I chose Boston not because our home team was not really good, but rather because for this period in time Paxton’s heart required the very best!
The senior surgeon hand-picked for Paxton’s set of circumstances is in the top 1 percent in his field. He is confident and this brought me so much comfort. Even though I felt uneasy about the unknowns of traveling across the country for a risky surgery that could require a timely hospital stay, I felt such peace in the decision I had made.
Paxton amazed everyone in that he sailed through the Fontan surgery. He was up walking around the CICU with tubes coming out of his body the second day after his surgery. Paxton was back home in Missouri in just one week. Our home team could not believe that Paxton walked through the doors to see them for his post-Fontan check up just one week after boarding a plane for Boston.
All the emotions that our team back home might have felt about seeing him go to Boston all went away after they looked at him. They knew we had made the right decision for our son and they showed so much pride in our success.
Paxton’s home team is still his team. We will never take that away from them. They still love him and are still involved in his care. They are ultimately the ones who gave him his chance at life the first 12 times. It is just that we have now added to our team of lifesavers. Boston Children’s ultimately saved my son’s heart when our home hospital was considering giving up on it.
A recent post-Fontan check up at Boston Children’s proved that Paxton’s very own heart is the best that it can be. We will continue to have them check on Paxton for the years to come simply because they are one of a few heart centers, such as the Children’s Hospital of Philadelphia, that are thinking outside of the box for the future of our HLHS kids.
My husband and I are fortunate to have exceptional health insurance that paid for Paxton’s treatment in Boston. I understand that not every family has the same resources. The second opinion itself was provided at no cost by Boston Children’s Hospital. The same is available for all heart children.
I find comfort and rest knowing that I followed my instinct to get a second opinion and to follow where my heart led my son. I also find comfort in his home team that we still trust for his day-to-day care.
Ultimately, I am my son’s advocate. It is not about sparing feelings and it is nothing personal to seek another opinion. I would do it all over again. Sometimes it is necessary to separate ourselves from the team we love to make sure we are giving our children their best chance at life.