Compressed Esophagus Upper GI Image
This, my friends, is an image from the Upper GI Apollo had done in April of this year. The black you see is his esophagus. The esophagus is where your food goes, and should hang straight down. This is what his esophagus looks like now, after his double aortic arch division.
Why Apollo Couldn’t Eat
This is why Apollo has struggled to eat from the day he was born. This is why he spent nine months (between the ages of 9 months to 18 months) hovering between the 0-1% on the growth charts. Why he didn’t creep above 3% until after his double aortic arch division in March. This is why he simply didn’t grow despite my spending the majority of the day breastfeeding and trying to get more and more solids into his mouth. Why he didn’t grow despite the “high fat diet” we had him on.
The Feeding Evaluation Got it All Wrong
It certainly makes one wonder about the feeding evaluation he done when he was 15 months old. The one where I was told he was just “afraid to eat”. It makes you wonder why, in those 27 visits to our primary doctor in his first two years of life, a swallow study or Upper GI wasn’t suggested before. It makes you wonder about his two dozen visits to the Children’s Hospital, when this apparently wasn’t noticed. It makes you wonder why the ENT never noticed a problem and said it was just “allergies and reflux”. I have been concerned about his difficulty eating since the day he was born. While there have been times that things seemed to be getting better, he clearly was never “cured”.
Heart Surgery Didn’t Fix Apollo’s Compressed Esophagus
The thing is, we were told this would be fixed with his heart surgery. And I suppose 99% of the time it is. So nobody checked to make sure he was “fixed” post-surgery…According to the doctors, this is so rare, there was no reason to check. You’ve probably heard the saying, “when you hear hoofbeats you look for horses, not zebras”. Well in Apollo’s case, I think they better start looking for zebras. Every time. If there are odds to defy, he will do it. If there is something so unusual it’s not worth checking for, he probably has it.
Life with a Compressed Esophagus
So what does this mean for Apollo’s future? Here’s what I wrote back in April after returning home from the hospital:
As far as the CAT scan, it is indeed vessel from his funky aorta pushing against the esophagus. Surgery to correct this is occasionally done on adults, but it is very risky and in Apollo’s case, the vessel would have to be moved to a less-than-ideal spot, which could lead it to kink. In short, there is nothing that can be done about it. The cardiologist said there are NO long-term studies on patients with these. With this misplaced vessel, Apollo just took his very rare heart defect, and made it ever more rare. The cardiologist did find one study, which showed most patients with this are doing very well at one year post-diagnosis.
Residual Aortic Arch?
Nothing has really changed between April and now, I just didn’t have the image before to show you. When I talked to Apollo’s cardiologist at the park on Monday, he gave me a slightly different story (he wasn’t at the hospital when Apollo was admitted, so we haven’t talked to him post CAT scan). He said this was likely “a residual left aortic arch”. He mentioned the possibility of surgery too, but we’re talking open heart surgery this time, a much riskier procedure and less of a chance of success. In fact, as far as I know, this procedure has only been done on adults. Our cardiologist is going to talk with a colleague in Chicago who he thinks may have more information.
Keep in mind, we are talking about a defect (double aortic arch) that comprises less than 1% of all heart defects. And this complication is even less common than that. In fact, so uncommon, I was told they’ve never even seen it at Seattle Children’s Hospital before.
So we are kind of in uncharted territory here. Chuck and are looking into getting a second opinion. We haven’t given up hope yet.
And, being the terrific parents you are, you would never give up with any of your 14 (I think it’s 14, sometimes I get a little confused with adopted and biological) children. But from the pictures and your reports seems like Apollo is actually sleeping better, gaining a little weight and growing, and even eating. He sure looks better, and he is such an endearing little boy. But I know you will never give up on trying to make his life as normal as possible, and that’s a great thing!
OMGosh!! That’s crazy! Poor Apollo! No wonder he didn’t want to eat! And open heart surgery! That must have put a damper on your afternoon at the park! I’m praying for you guys.
🙁 Prayers continuing of course! He’s so special!!
I hope your doctors support you if you choose to get a second opinion. With something this rare I’d think they’d like another opinion just to cover all the angles. Your little guy is a fighter and I’d nice to see your more recent pictures of him looking healthier and happier. I pray that continues for him.
My question is this- and possibly you have answered this- if the doctors had caught this sooner what could have been done? would a feeding tube have still been the best option, in order for him to gain weight? If yes, then he could have avoided all of these miseries much earlier on. The feeding tube seems to be doing wonders for his quality of life. I know that would not have been an optimal desire of course… would they have done something different in surgery?
Have been and will continue to pray for apollo and your whole family. That x-ray is terrible. Its a good thing that God lets us as mothers know when we need to fight for our children, even as others say the’re fine.
I’m a RN, but I take care of adults. This may not be a treatment choice for children, but I frequently see GI specialists taking patients in for an EGD with the purpose of stretching the patient’s esophagus. I find myself wondering if this would be an option for Apollo, now or sometime in his future. Prayers and best wishes to all of you…
I don’t know how far you are willing to travel but this doctor: http://michaelsetzen.com/ is excellent. One that listens. One that spends hours with patients and hours trying to find an answer. Send an e-mail with a brief history and the image. See if he can help.
Suzanne- we will have to travel out of state for a second opinion. We just want to make sure it is the right doctor with the right experience. I will check out your link.
🙁 Still praying
Still thinking of you all and sending prayers, Renee. I don’t know much about any of this at all, but would a specialty hospital like the Mayo Clinic in Rochester, MN perhaps have folks doing some highly progressive work around this type of cardiac defect? The other two places I can think of are the Hospital for Special Surgery in New York and, of course, Yale in New Haven, CT. Sending healing thoughts all your way.
We are looking at Mayo, to see if they have anything to offer, but also Boston and Texas. Both have top pediatric cardiology programs.
Thanks for posting that incredible picture. I hope you’re able to get some helpful and informative second opinions. It sound like you’re doing good, careful research. In the meantime, it’s great to hear that the surgery did greatly improve his breathing, and that the G-tube is now working well. It seems like you’re in a relatively stable place right now, so you can take your time finding the right next step for Apollo.
Robyn, that’s it precisely, he’s relatively stable, no crises, so we can take our time to research. Plus, I think if anyone were to attempt surgery, there is no “hurry” like there was with the double aortic arch division, since the current anatomy isn’t effecting his breathing and isn’t going to cause further damage.
We had an excellent experience with Columbia Presbyterian “Babies” — which I think they now call Children’s Hospital of New York. Their cardiology was amazing and we got attention and expertise. They were our second opinion, we started out in Philadelphia at Children’s Hospital of Philadelphia which is also meant to be very good, but we did not have a good experience with their cardiology. We loved their GI though — it is a matter of finding the right doctors for your child and his particular issues.
Sending prayers, love and good wishes. My son was also tube fed until his issues were resolved so I relate to everything you are talking about. Hang in there and one day Gd willing Apollo won’t need the tube any longer.
That image made me so sad. Poor, sweet Apollo. I can’t imagine your suffering as his mother. Your never-give-up attitude is inspiring, though. I hope and pray that you find an answer someday soon.
Renee-That is exactly what Joseph’s Barium Swallow looked like…literally exactly the same! The indent on his osophagus is caused by an abberant right subclavian artery which has come off the aortic arch in the wrong place. As you know we had all the tests done as they were convinced it was a vascular ring but it turned out it was this.
They have mentioned pretty much the same op as what you were told…open up and move the artery from one place to another but its such major major surgery with no guarantee of success. I would hazard a guess that Joseph’s possibly doesn’t indent as much as Apollo’s does because he is still able to eat so more food must be getting through.
I will try to get a copy of his swallow and send you a picture of it…maybe you could then show Apollo’s dr’s over there to see if it is the same?
Julie, is there a name for what Joseph has? It’s driving me crazy that I can’t say he has “such and such”…I always have to explain it. And it makes researching it darn near impossible…
His is called an Abberant Right Subclavian Artery…or some of the Cardiologists call it ARSA. There is not much literature about it as everything seems to be about Vascular Rings (hence how I found you guys!).
I honestly don’t know if it is the same thing but its basically an anomalous artery causing compression on the osophagus which does sound incredibly like what Apollo has doesn’t it?
My ten month old little girl has a compressed esophagous as well due to an abnormal heart vessel. Did yours ever have surgery?
Erisa, Apollo had surgery at Texas Children’s Hospital which completely removed the compression on his esophagus! Please email me if you have any questions. bergerondozen (at) yahoo (dot) com
Julie. I just read your comment. That’s exactly what my daughter has. How is your child? What happened as far as treatment?