I have been fortunate enough to have a Mom who has taught me to resource. She has taught me to succeed in all things that I do. I truly have been taught to never give up. I have found that one great quality that I have is persistence. This has become very handy with Stockton's condition. I have spent countless hours doing research and speaking with different doctors. When it comes to my children's care I won't accept anything but the best. I take a lot of pride in picking my children's doctors and I always get a second opinion, if not a third. We are fortunate to live near a great children's hospital in Utah. Even though we have lived here over a year I can't call that hospital home. After we were blown away by the postponing of Stockton's next surgery I started to ask more questions and get into contact with more doctors. That is the only way I can be a parent. I am trying to do my best and have everything covered so I can look back with no regrets regarding Stockton's care.
Dr. Chris Petit was with us at the birth of my son, Stockton. He carried us through the first few weeks of his life. He is amazing. He is very positive and was always willing to answer questions. He performed Stockton's first heart cath procedure and we left the hospital the next day! Dr. Petit left Texas Children's during our interphase stage. (Between the Norwood and Glenn) He leads the cardiologists in Atlanta, Georgia now. After e-mailing him I got a response the same day. You can read the e-mails below.
Dr. Petit,
My son Stockton Watson was born 07/30/11. We met you at Texas Children's Hospital the day he was born. He has HLHS. You performed his first and only heart cath. We saw you through the single ventricle clinic until he had his Glenn. You were of great help to us and we always loved the advice you gave. When you left TCH you gave me your e-mail in case we ever had questions. Stockton is now 2 1/2 and we moved to Salt Lake City last year. He is doing phenomenal and has had no problems. I just wanted to get a second opinion about the timing of his Fontan. We continue care through Dr. Elena Ocampo and travel to Texas for appointments. We see Dr. James Hoffman in Utah if we have any questions or need immediate care. Stockton was scheduled to have his cath this month and his Fontan this August. We recently were contacted and TCH postponed Stockton's Fontan to Fall 2015. Dr. McKenzie is our surgeon and we trust his judgement but we are also concerned. Primary Children's in Utah wants us to have our Fontan soon. They do the Fontan a lot earlier here in Utah. We are not in a hurry nor do I need a response right away. We just want to do the best thing for him. I have attached his last medical visit below and a picture of him, of course.RESPONSE:
Hi Brittany,
So nice to hear from you! Wow, Stockton is a handsome boy. That's a beautiful photo of him.
I reviewed all of his information that you sent. I understand that different centers have different protocols or tendencies when it comes to the various stages of single ventricle surgery. What was done at TCH is obviously different than in some other centers.
After a lot of reading of studies, and doing some of our own research into this topic, I have come to recommend the following for patients like Stockton:
1. So long as his oxygen saturations are reasonable (above 80% most of the time) I prefer to wait until the patient is > 4 years of age. Definitely have it done before Kindergarten -- kids at that age want to be so active, and becoming cyanotic and short of breath could become socially isolating.
2. There seems to be some evidence that earlier Fontans don't do quite as well. I trained at CHOP, where we were regularly having Fontans done at 18 months of age. Effusions, length of stay after the operation....those plagued the patients. Elijah Bolin, a TCH fellow, and I did some research also which showed better results when kids were at least 4 years old at time of Fontan.
3. If his saturations are low, or he is becoming symptomatic, I wouldn't hesitate to have the Fontan done sooner.
4. If I were in your shoes, I would stick with Dr. McKenzie as well. He's a fantastic, talented surgeon. Worth traveling for!
I hope that helps. Thanks again for the email, and for the photo of your handsome boy!
-Chris Petit
Christopher J. Petit MD
Children's Healthcare of Atlanta
Emory University School of Medicine
I guess I feel great about pushing back Stockton's OHS. We are continually monitoring him and his activity. We feel so blessed to be surrounded by amazing doctors and staff. I feel so much better.
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