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Double Aortic Arch Division {Two Years Later}

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Two years ago today, Apollo had his first double aortic arch division at Seattle Children’s Hospital. We were so naive and full of hope. He was diagnosed with a double aortic arch on January 18, 2012 through an MRI. We were told the surgery would fix both his breathing and his eating issues. Once the surgery was done, his trachea and esophagus would be freed up. He would no longer be strangled by his heart. We were told his eating issues would be resolved right away, but it might take up to a year for his stridor (noisy breathing) to resolve.

Two weeks post-surgery we were told his heart was “repaired”. Apollo would see the cardiologist at six months post-op, and as long as no new issues arose, he would be finished.

{are you laughing yet?}

What no one knew, what we wouldn’t know until summer when I began making phone calls and asking questions, was that the surgeon, for some unknown reason, placed a metal clip on Apollo’s left subclavian artery. This clip cut off the supply to his left arm completely. While he recovered from surgery, his body was busy making collateral arteries to supply his arm with blood…by the time the doctors discovered this (and only after my continual  questions) he was supplying his arm and neck with blood directly from his head. And brain.

But none of us knew this. We brought Apollo home for the very long healing process. Apollo was so traumatized by the surgery, he would no longer sleep on his own. Words such as “pajamas”, “bed time” and “brush your teeth” became triggers for Apollo. He would immediately begin to cry; and if he felt well-enough, run away from us.

For the first time we were told, “Apollo may not be able to keep up with his peers” as he gets older. Two years later, I can tell you deals with fatigue and tiredness almost daily.

Six weeks post surgery I called the hospital close tears. Apollo’s breathing was so bad at night. The noises he was emitting sounded just like the noise a balloon makes when you stretch the top and slowly let air out. You can click here to listen. I recorded it to show the doctors just exactly what was going on. He was seen by a pulmonologist the next day (a Friday) and admitted Monday morning for a marathon of tests. double aortic arch, double aortic arch division, seattle children's hospital, heart surgery toddler, heart center seattle children's hospital, vascular ring, vascular ring repair

In the end, he had: two bronchoscopies (flexible and rigid), a CT scan, a swallow study, and an Upper GI. We were told he had another vessel from his heart pushing on his esophagus. A cardiologist came in and told us while it could technically be repaired, it was too risky and in Apollo’s particular case, wasn’t likely to work anyway. When the GI doctor came in to consult with us, I immediately began to thank him (I was so relieved to finally know the root of his feeding issues- issues many of his doctors didn’t even seem to believe really existed). The GI doc stopped me mid-sentence and said, “I’m sorry, but this isn’t good news. I can’t do anything to fix this”. His tone was sobering.

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Apollo had a g-tube placed one week later.  His GI doc knocked a few kids down on the list to make Apollo a priority. Because of the compression in his esophagus, an NG tube (placed in his nose) wasn’t an option for him.

The recovery from the g-tube placement was long, slow and drama-filled. Probably because his body was still recovering from  heart surgery (seven weeks earlier) and was under-nourished.

When he was finally recovered, I called down to Children’s innocently to ask what specific artery was compressing his esophagus. I was trying to do some independent research, and wasn’t completely clear on what the issue was. By this time, I had requested Apollo’s medical records and read every single word. I talked to a nurse in cardiology who said I needed to speak to the doctor who said it was “complicated” and we needed to talk in person.

It was in September that we learned losing his left subclavian artery was considered a “complication” of the surgery. So was the piece of artery pressing into his esophagus (called a diverticulum). By this time, both surgeons who operated on Apollo had moved out-of-state and we never did learn why his aortic arch was cut in such an unusual spot and why the clip was placed on his left subclavian artery (completely unheard of for this type of surgery).  We were given the option to: do nothing (despite his risk of choking and developing subclavian steel syndrome), have the surgery redone at Seattle Children’s Hospital (where no one had ever redone a double aortic arch division in the history of the hospital) or find a surgeon out-of-state to do the repair. Chuck and I never questioned which choice was the right one. Of course, this needed to be repaired. And according to his pulmonologist, the sooner the better.

I spent  countless hours researching online and calling hospitals until I found a surgeon in Texas who had done double aortic arch re-operations. We flew down to Texas mid-October of 2012 and he had his second double aortic arch division October 30, 2012.

So here we are, two years later.

I have had to fight tooth and nail every step of the way. First, convincing doctors something was wrong, begging for the MRI that diagnosed him, insisting something was still wrong with his eating and breathing. Finding a surgeon myself to re-do the operation. It has been an uphill battle that has consumed me (and our family) at times.

Chuck and I often wryly joke that Apollo has a “kick me” sign on his back when it comes to doctors. It has been a battle and journey we never could have imagined.

So how is he now,  two years later?

His stridor is gone, his esophagus has been “freed”, his left subclavian artery has been rerouted and repaired. He is sleeping better since he began an iron supplement in December (though he still sleeps with us or a sibling). He still has his g-tube, but can eat. He struggles with fatigue and gets short of breath when he’s active.

In short, he’s better than he’s ever been. And we are still fighting to get him the care he needs.

 

9 Comments

  1. Melpub

    I’ve had quite a few experiences with doctors! Oh, trust your hunches, is what I got out of my experiences. What you’re describing sounds to me like the doctor made a big boo-boo. I’m no specialist so I could be wrong. Google every kid-cardiologist in the world, is what I think! Then go with the nicest. One internet source I’ve come to trust is Gabe Mirkin; he might have useful ideas.

  2. sarah

    Renee,

    You dont seem like the type to consider this, but I am wondering you if should speak to an attorney about the clip left on his heart. It sounds like a mistake and not a reason. I understand mistakes, but the dr should have fixed it on his dime. When i make a mistake I pay for it. :). Espically when I make the mistake of speeding when driving….. but uh, lets not talk about that. 😉

    I’m sorry to sound so snotty, I just read you going through the wringer, and I think about the doctors, “seriously! This is a baby, stop messing around!”

    • bakersdozenandapolloxiv

      We have both considered it and spoken to a few lawyers. What it comes down to is this: we can’t pay a lawyer out-of-pocket, so they won’t take our case unless they are 99% sure they will win (to recoup their costs). Because Seattle Children’s is a *huge* hospital, they can afford to hire the best lawyers. One lawyer I talked told straight up he wouldn’t take on Children’s because they were “too big”. He told me, if we were suing the surgeons, we would also have to sue the institution where they were employed. We could file a complaint with the hospital or state board, but neither matter since they are both out-of-state now. It is beyond frustrating.

  3. Amanda

    Such a strong little boy and such a sad story.
    He’s very lucky to have such caring parents who will never give up on him and push for the answers that’s he needs.

    I comend you, your husband and all your children.

    ♡ Amanda

  4. Maddi

    I was asked to download something via pop-up (a virus probably) when I opened your blog just fyi. Also I have still not received an email from you or lessonface about the contest. Maddi Wiser. I have followed Apollos story from day one and You posting these recaps always gives me a chance to look back with you. One thing is for sure, Apollo is a brave, strong little boy. Posted via mobile sry for any typos. 😉

    • bakersdozenandapolloxiv

      Thanks for letting me know, I’m looking into this. Sorry, I replied to you one Facebook. I will be sending you the gift certificate as soon as I receive it.

  5. Brandy

    I am glad to hear he is improving. I hope he continues to do well. I too had this defect, almost 40 years ago. My father was military. I was born in Germany and flown to Walter Reed Hospital for the surgery, when I was a month old. I have a metal clip still visible on X-ray, but it was correctly placed. I hate that this was poorly done the first time. I would investigate and possible report it to the physicians medical board for your state. Not to make trouble, but I would hate for the doctors to continue performing this surgery incorrectly on other unsuspecting patients.

  6. atalia

    Hi I’m very glad to hear that he is doing better! my now 3 month old baby has had his arch repaired at 11 days of life *(we were lucky it was detected during the pregnancy ) he was released with an ng tube due to some swallowing issues acquired as a side effect from touching the laryngeal nerve .. he passed a swallow test at one month… at three month he came down with his first virus and ended up in the emergency room in respiratory failure..intubated and all… after several desaturation episodes induced by crying and coughing the docs did a flexible bronch..mri and then rigid bronch which showed that even though his left artery was removed the right one was still too heavy for his little trachea and was compressing it severely causing also severe tracheo bronchomalacia. … he was operated last week with an aortopexy which basically lifts the artery off the trachea and it’s sutures to the rib cage … he is still intubated and we are waiting to find out if this is enough to prevent his trachea from collapsing completely when he coughs or cries… this was also considered a rare case since most daa repairs do not require a second surgery. .
    oh Btw they also found a laryngeal cleft during the rigid bronch which explains s coughing and choking during feeds…this will be a dressed when his airway is better.

    • bakersdozenandapolloxiv

      Thank you for sharing your story with me. They briefly discussed aortaplexy for Apollo but felt it was too risky. In the end we took him to another state and had a different surgery done. His breathing is fabulous these days! He still struggles to gain enough weight and eat though.

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