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Not a *Real* Heart Mom {Double Aortic Arch}

20100806_4691 blog

Apollo six weeks old.

Not a Real Heart Mom

Most of the time I don’t feel like a Heart Mom. Not a real one, anyway.

My son was declared “perfect” at birth and wasn’t diagnosed with a double aortic arch until he was 18 months old.

He didn’t require open-heart surgery. He *just* had his ribs separated, the incision made between them. No one sawed open his sternum and wired it back together. They didn’t touch is actual heart during surgery, just the arteries surrounding it.

We Won the Lottery Noone Wants to Play

We had won the lottery of heart defects.

For a long time, I felt like I was just peeking into the door congenital heart defects. Given a moment to glance in behind that door and see what it might be like. Almost like Ebenezer Scrooge in A Christmas Carol. I had a brief glimpse of what life was like with a heart baby. I spent a few days in the cardiac ICU. I learned an important lesson. Then I slowly closed the door and tiptoed away.

Only I didn’t get to tiptoe away. Slowly, slowly, the door of congenital heart defects has been opening wider over the past year, shedding its light on every aspect of my life.  Until August when it was flung wide open. No more denying it.

Apollo is a heart baby.

Apollo is a Heart Warrior

I have known a handful of friends who have had children with heart defects that required open-heart surgery. From the very day of Apollo’s diagnosis, I was thankful it wasn’t so much worse. He didn’t need open-heart surgery. He’s not on blood pressure medicine. His long-term prognosis was “good”. The hospital’s website describes his surgery as “a non-invasive procedure”.

{That turned out to be a joke!}

No Open-Heart Surgery

Back when he was diagnosed I was so, so thankful that Apollo didn’t need open-heart surgery. And I held onto that thankfulness like a talisman that would protect me from things far worse. If I was thankful enough, surely God and nature would protect me. I was counting my blessings. I knew how well off Apollo was.

It’s true, Apollo will likely never face open-heart surgery. It’s also true that he will likely never be healthy.

Right now, every aspect of his life is touched by his rare heart defect. He has a damaged airway. He’s a two-year-old who gets out of breath by just playing.  He’s lost his left subclavian artery. He can barely eat, choking on almost anything solid. He is fed by g-tube. He has trouble sleeping. Sure, his heart works fine, unfortunately, his arteries are like a lump of tangled electrical wires. No one is quite sure where the lead or how to untangle them.

Now I feel like a real Heart Mom. And it’s a sad, lonely feeling to have.

{I started writing this a few weeks ago and never published it. For those of you not following on Facebook, Apollo is sick right now and on another round of antibiotics. He has a horrible, wet cough. Vomiting.  Complaining of his head hurting, no energy (but no fever). Please pray that he is better before we leave for Texas!}


  1. Sharon Muza, New Moon Birth

    I guess I am a “real” heart mom, as my oldest daughter had full blown open heart surgery at 13 1/2 (very old to be diagnosed with a congenital heart defect, her pediatrician saved her life at a well child check up!) I remember sitting in Children’s in Seattle, while she was in surgery, and receiving pages that kept me updated, at each step, and one page said, “her heart is stopped and she is on the heart and lung machine” I almost couldn’t breath. How could my daughter be “alive” and not have a beating heart. It was paralyzing to me. So scary! So unimaginable. Does this mean you are dead, until your heart beats again?

    And you know what, when your child is sick, it sucks! Big surgery, little surgery, unknowns, major decisions, uncertainty, fear, confusion, anger, grief. It doesn’t matter what the situation is, as a parent, it has an emotional (and physical and financial) cost. And that cost is huge. I am so sorry that your sweet boy has had so many struggles. I hope that the way becomes clear and fixes happen. But remember, this baby once slept inside, listening to your heartbeat! so you will always be a “real” heart mom!

    • bakersdozenandapolloxiv

      Crazy! I remember reading her story, but can you remind me what her heart defect was? Back when I read it the first time I was much *less* educated about CHD than I am now.

  2. Aaron Stevens

    I got teary eyed reading that, I am praying for your family, and I know you hear that line a lot. I’m not sayin that as a bad thing, cos I know that God has socreign controll over all of this, and i know you know this too, but I just wish there was another way, a material way the I could help you guys, but can’t at this stage, praying is all I can do at this time,
    Been keeping Apollo in mind through this last week, praying that he will be healthy in time for the flight to Texas, but hey maybe going to Texas like he is may help his case to the Texas doctors to really see how serious this is affecting him.
    I wish I could be there with you guys, but know you are in my thoughts and prayers.

  3. Adriana

    I know exactly how you feel. Even though you feel alone, you aren’t. You are connnected to all of the heart moms, in pain, in love, in prayer and in strength. More prayers going to Apollo. Be strong for him.

  4. Ruth Einfeld

    Renee, I am praying for you and Apollo and your family as you navigate this unbelievable, unimagined journey. Just remember that even in your loneliest moments, you are not alone, but being held by your loving Heavenly Father. I know, I was there…for weeks on end.

  5. Michele P

    I cannot imagine how alone you feel, but can I please reassure you that you are never alone?! The Lord is holding you and your familiy in His hands, and so many are covering you in prayer. This post made my heart ache for you! I am sorry Apollo is sick- praying that he is feeling better soon. You walk a tough road, Renee, but I think you are amazing woman of strength, even if don’t feel that some days! Hugs from Virginia, may you have a blessed day!

  6. Marie

    Chronic illness is a lonely isolated feeling that those with chronic illness or live with those with chronic illness totally understand. We say the same words as everyone else, “I’m sorry. My heart hurts for you. I’m praying.”, but those words carry some different meaning. We understand the ups and downs of the emotional roller coaster of the day in and day out, of having “good days”, but the good days are never without shadow over them. The path is dusty and hard. Please know that we are ever cheering you on, loving you, praying for you, hurting for you, rejoicing with you.

  7. Judy Small

    Renee, this post made me just ache for you. I have no answers…just prayers. I wish I could “do” more, but I know that God can do much more than I can in this case, so I will continue to lift you up to Him.

    If there is anything practical that I *can* do, I hope you will make that known so I (and others) can help carry your burden.

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