Repairing My Son’s Heart

Our firstborn came to this world with a serious heart problem. He had holes between the his chambers, which fortunately is a not so unusual condition and easy to fix. But he was also diagnosed with Truncus, meaning he was born with an Aorta but no Pulmonary artery, hence giving his body no chance to receive oxidized blood. The doctors noticed it when he was a week old. I never forget the Cardiologists word during the ultra sound: “Well…” he said abruptly, “your son has a heart failure. He will die if we don’t operate immediately!”Just like that. No forewarning. No preparation. Our child, whom we had been longing for during much tribulation (my wife was very ill during her pregnancy), was now about to be taken away from us. How can one take such news without going into a state of shock.

Today I won’t go into all details, but suffice it to say that our son had his surgery. After eleven hours of complications on the operating table, he heart was fixed after a lot of cutting and pasting; most radically, the surgeons had to place a tube that connected to his heart’s right ventricle, then onward to both passage ways to the lungs. The tube, however, does not grow with the body as he grows older, so it needs to be exchanges from time to time. That happened to Johannes when he was a year old exactly.

Since then we, or rather he, has been very blessed. The second tube has “survived” longer than what is considered normal. The problem, however, is that it will, because of time, tighten up naturally, leaving a smaller passage way for the blood, making the heart pump faster. So the doctors have a important, balanced decision to make: Having to many open-heart surgeries will tare on the young body; operating to late will damage the heart muscle.

We have been told that it is soon time again to have open-heart surgery, but last week we took Johannes to the hospital for a few days, right before his tenth birthday, to open up the tube a little more. The doctors wanted to do this just to buy a little more time. It was simply done (if there is such a thing) by going up through the vein into the hearts right ventricle, and inserting a stent, a tiny steel net, into the tube. This was blown up by an ever more tiny balloon which opened the net so it widened the tube a fraction.

It went well…. we think. Time will tell. Our son handled it all very well, however. We are so proud of him. It’s not easy being a “heart child”, but God has blessed him immensely in is life, giving him an exeptionally good health after all. And even though it is never fun being at the hospital, the staff was great. We have many of them before and consider them our friends. Johannes was treated as a king. Which he is.


Preparing for operation.


After operation, together with his mother.


Recovering in hospital bed with gift from little brother.

5 replies »

  1. My son also has Truncus, but he is only 19 months old. If you would like to meet other families with Truncus, including an online support group, you can visit his page, there are links posted.

  2. Thanks so much, ladies! I appreciate your thoughts and prayers.

    Just to add, we also feel that Johannes’ doctors are heroes. We can never thank them enough… and they should be making a lot more money 🙂

    Brother Louis

  3. Hi Louis
    What a heartbreaking story… But amazing how brave your little boy is! And wonderful that doctors/surgeons are so good at their job:-) My father got a lounge transplant back in 1989, sadly he passed away after 6 months…
    Johannes must have an guardian angel watching him:-) Take care everybody,
    hugs from Lene

  4. Hi there – My name is Julia and I stumbled across your blog and your post. My son was born with a congenital heart defect as well. He nearly died, but thanks to some amazing people and definite miracles his life was spared and he made it to and through surgery. Now he is two years old and the healthiest kid I have ever seen.

    I was excited to read that you are LDS – we are as well. I have been all my life, my husband too. We currently reside in the United States. I invite you to stop by my blog if would like. I’d like to post a link to you, especially so I can keep up on how your son is doing. Know that we will keep all of you in our prayers.

  5. My eyes were in tears reading about your son… so tuff he is.

    As a parent I can imagine how hard it is and have been for you and your wife.

    I send him my best wishes!


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