Mended Hearts Open Forum

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  • 1.  ARCAPA, Surgeons and Recovery

    Posted 01-06-2023 13:07

    Good Morning,

    I believe this is my first time posting to this forum, so please forgive me if I don't have everything dialed in terms of typical methodology for posting a topic. My son (3) was recently diagnosed with ARCAPA, the less-apparent cousin of ALCAPA, and we are looking to schedule surgery to get this remediated. We had a meeting with a surgeon at Denver Children's, which is close to where we live, and we felt that there were some things that were off-putting. The surgeon did not seem to know our names, nor our son's name, and was very blunt and somewhat aloof in how he answered questions. At times, this took on a dis-interested style. I come from a family with a lot of surgeons in it and immediately was reminded of my own father who I would imagine has a similar bedside manner, but my wife came away feeling very uncomfortable.

    Contrast this to how folks from a hospital in Austin, TX treated us. When we met with the surgeon at that hospital, they had CT scans ready to go to provide a visual aid on how the procedure would go, plus we were introduced to the entire supporting staff, from counsellors to nurses, and received a greater overall picture of the care that would be provided there. Granted, this felt a lot more like a sales pitch than our meeting with the surgeon in Denver, but the differences were stark enough to cause some doubt to creep in our minds as to the "right" decision.

    I'm asking for those that have gone through this, as parents or providers, is this something that should be concerning to us? We know the surgeon in either location would likely do a good job (at least that's what we tell ourselves), but have people had this type of situation occur wherein meeting with the surgeon created these doubts and would be willing to offer their insight on their experiences to help us understand and make a decision.

    I also would like to hear what the recovery from open-chest surgery is truly like with a toddler. We've received the cliff notes version, indicating that a stay in the ICU will likely last for a few days to a week followed by some return visits before finally releasing us entirely to go about recovery at home. What are days in the ICU like following a procedure like this? What are the major pitfalls of the recovery for a toddler? What can parents do to better prepare for this recovery? Things of this nature.

    I greatly appreciate anyone who wants to take the time to respond to these specific questions. 

    Ethan Bucholz
    Fort Collins CO

  • 2.  RE: ARCAPA, Surgeons and Recovery

    Posted 01-07-2023 04:29

    I'm an adult open heart surgery survivor so I won't address any of your child related surgery questions and will let others whose kids have undergone that procedure address those questions.

    I do though want to make the point that, although bedside manner is nice, competence is paramount. As I expect you know based on your surgeon father, surgeons are technical specialists, like dentists, and the best ones possess not only exceptional judgment about dealing with emergencies and routine issues while a patient is under the knife, but also the hand/eye skills of a sculptor in performing the work.  

    Do yourself and your family a favor and chose the best technical surgeon you can find rather than worrying whether she or he is " a nice guy."  If you can get both, then fine, but I wouldn't sweat it too much.  

    I met my thoracic surgeon once, for 2 minutes before my emergency open heart surgery and only saw his nurse assistant afterwards.  I was fortunate that he was regarded by medical professionals as a top surgeon.

    Now, with respect to your child's cardiologist, who your family will be seeing on a regular basis, bedside manner IS critically important and as important as technical knowledge and experience, but that's different than a surgeon who will be attending you while you're unconscious, under the knife and who you will not normally be seeing more than once or twice.

    Good luck and good health to you, your wife and your child.


    Ira Reid
    Hoboken NJ

  • 3.  RE: ARCAPA, Surgeons and Recovery

    Posted 01-07-2023 05:24
    First, I great empathy for your situation. Stressful and concerning. 

    Yet...the decision of what surgeon is quite simple. Go with the one you trust and will work with your son, yourself , wife and your entire family. I have had 3 open heart surgeries in a 10 month period and the ability to communicate and have total confidence in the surgeons ability to communicate and perform the surgery was paramount in our decision of what surgeon to choose. To have a one-on-one discussion with a surgeon and feel like he or she is talking down to you is a non- winner. I think you know who that is already. 


    Michael Hinderlie
    Port Charlotte FL
    (941) 421-0482

  • 4.  RE: ARCAPA, Surgeons and Recovery

    Posted 01-07-2023 09:47
    God bless all who are going through surgery or recovering from heart related surgery. 

    Mahalo E Ke Akua No Keia La ~ Thanks be to God for this day!
    Peace begins with me.

    Godwin Wong