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A Decision! April 16, 2012

April 17, 2012

We are not going to have the tracheal occlusion surgery and we feel good about it. We were really back and forth about it all weekend, having a hard time because logic said “no” but our hearts said “what if?!”. We were so fortunate to hear from so many CDH parents, both who had and not had the surgery. Those that had had it done thought it was life saving. But as one dad described it, it’s a “hail Mary” and in our situation that isn’t something we needed. But despite everything all the amazing doctors, parents, and our friends and families said, we just couldn’t shake the feeling that we were giving up a golden opportunity. I didn’t want to get it wrong.

In the car on our way to our appointment, on the radio they were talking about Roger Ebert. He’d had jaw cancer and had gone for some experimental treatment which he greatly regrets because it caused thyroid cancer which disfigured his face. I actually turned to Hubby and said “So he had experimental surgery and it ruined his life? I think God may be telling us something here.” I know God is not talking to me through the CBC but it really did make me feel better about our decision.

Our meeting was with Dr. Seward, Dr. Ryan’s partner and someone who has a vested interest in doing TO surgeries (to get their numbers up to get in the study, etc.). Well Dr. Seward looked at our file and basically told us to go home. He said this is not a benign procedure and it’s not worth the risk to our little man. Hearing it from the doctor who would want to do it was what we needed. I didn’t feel comfortable making the decision, heck I’m an art teacher! I needed a doctor to make it for me. And he did. And I feel great.

On the ultrasound little man was at his cutest. We got to see his gorgeous little face, not just in profile but from all kinds of angles, practicing sucking and all that, and we saw him scratching his butt! Hilarious. He’s growing well and, other than the CDH which I hate, he looks great, so that was good news. Now we just follow his growth and wait 12 weeks for him to make his grand entrance so we can get this fight started.


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  1. Ann W. Friedman permalink

    Hi Alex and Tim,

    It’s great to hear that you have made a decision. I remember having a similar conversation with my cousin Larry (father-in-law/father to you!) fairly recently about making major life choices. His comment to me was something like, “The hard part is making the decision. Once you know what you are going to do, you just do it.” I agree with those wise words and I’m glad to hear that you are past the hurdle of making a choice. I’ll be thinking of you and look forward to more posts from your WordPress blog. Love and best wishes, Ann

  2. wordpressnancy permalink

    Hey Sweetie, one thing we never broached was the risk to you….surgery is surgery. Keep strong

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