Special Needs

our trip to the Mayo Clinic

Last Saturday, we took Trevor out to the Mayo to see a specialist for his cardiac condition. While we were there, we decided to get a second opinion on his hands and cleft palate. Every single-dingle diagnosis or recommendation for treatment that we left California believing was turned on its ear. We had thought we should wait for the hand surgery, but, the Mayo doctor said to start surgical treatment as soon as possible. We had been told to go ahead with the palate repair, but the Mayo doctor said to wait to see if speech is impaired before we do an unnecessary surgery. Most significantly, the cadiologist feels that the diagnosis that led to Trevor getting an Implanted Cardio-Defibrillator was not correct. In other words, we surgically implanted a device and hooked it to Trevor's heart when there was nothing wrong with his heart to begin with. We are overwhelmed by the options and advice and don't really know who to trust and what to do. When one doctor tells you that your child will die without a device, it is hard to imagine that another one says you might be able to remove it. Of course, we went out to the Mayo hoping that the diagnosis was wrong, but, it is scary all the same. They think the confusion was caused by the missed diagnosis of a rare genetic condition that I passed on to Trevor. So, in addition to dealing with the decisions and options, I am left with the guilt that I passed something on to my son. My DH is being so wonderful and is so supportive of me and trying to keep my spirits up. After all, if the new diagnosis is correct, it is WONDERFUL news. I am worried that he is so happy to hear good news that he is just naturally inclined to accept the good diagnosis vs. the bad. I love my son so much and would do anything for him to have a happy, full life without the worry of this cardiac condition. But, if our decision to stop treating it ends his life, I would not be able to go on. We are going to get a 3rd opinion on Oct. 1. We are calling it the tie-breaker. I know that there is no parenting manual and that a lot of parents have to make tough decisions about their kids......I just didn't think I would have to make so many life or death decisions in our first 6 months.....

Re: our trip to the Mayo Clinic

  • Wow, that is crazy. I know how intense the last 6 months have been for you...I've been in a very similar place though we got Marley's diagnosis very early on. So what is the syndrome that they think he has? Oh, I'm so glad that nothing is wrong with his heart. And if everything else is cosmetic and can be corrected by surgery- well that's just great. But I understand your sadness about passing on this genetic condition to Trevor. I have immense guilt for giving a mutated gene to Marley- but how was I or you to know? I'm trying to just let it go, but it's hard. It helps me to think that maybe this could be the best thing to happen to her and me. Please keep us updated on your 3rd opinion. If you need any referrals I've got a few good ones here in the Bay Area, including our geneticist at UCSF.
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  • I am overwhelmed reading your post so I can only imagine who you the mommy must feel. I am sorry that you have been pulled into so many directions. Hopefully the third opinion will clarify what needs to be done.

    We still have yet to test to see who Cash received the gene mutation from, my gut tells me me, but we are to afraid to find out at this point, because it could affect us as well. (Which should even be more of a rason to test - I know)

    I hope everything works out for the best for your family and am sorry for the news you heard - keep your chin up!

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  • Amanda, can you pass on the name of the geneticist? We are going up to UCSF for the 'tie-breaker' visit on the 1st. The syndrome that the geneticists at the Mayo think that Trevor has was named for a Dr. that was at UCSF for a long time. Maybe someone there knows more about it.
  • It sucks that you passed a bum gene to Trevor.  But think of all the other things you have given him..


    Unconditional love, support, nuture

    Everyday you choose to give those things to him.  Don't beat yourself up over the thing that slipped in via Mother Nature.

    And yay! for good cardiac news! That's great!

  • Sorry to hear that you are going through all of this.  Hopefully the 3rd doctor will tell you good news as well!
  • Aw hon - what an ordeal this has been for you guys :(  My heart really goes out to you and Trevor - I hope you get definitive answers very soon so you can move forward.  And I'm also sorry that you are feeling bad about passing something to Trevor - I carry around those same guilty feelings about Jack :(

    Keep us posted - we all think about you guys!

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