Apollo’s Story: Life with Double Aortic Arch Complications
Apollo was born June 26, 2010, by emergency c-section after experiencing a cord prolapse at home. He weighed in at a whopping 8 pounds 12 ounces (the biggest of my nine babies) and was declared “perfect” at the hospital. Unfortunately, Apollo had trouble nursing from day one. He was tongue-tied but had it clipped at two weeks old. We were hopeful this would solve his feeding issues, but while it helped, it certainly didn’t solve them.
Apollo was a fussy baby who slept very little. Despite all of our feeding issues, he was gaining weight at an acceptable pace, if slow, pace. At three months Apollo weighed in at 13 pounds 4 ounces.
Apollo Gets Sick
After returning from a night trip to Great Wolf Lodge Apollo woke up with wet, congested breathing. I thought he was coming down with a cold, but he never developed any other symptoms. His wet breathing (we would later learn this is called stridor) was constant from this day on.
Apollo Stops Gaining Weight and his Breathing Gets Worse
Then things got worse. By six months old Apollo still weighed less than 14 pounds. He barely slept. He was shrinking before our very eyes (notice he is wearing the same swimsuit in both photos). He went over three months without gaining an ounce. His breathing was raspy and wet sounding. He coughed a lot.
By this time I knew something was wrong. Apollo would choke and gag on any solid foods we offered. He had frequent coughing fits and always sounded sick. Every meal ended in screaming. This is where our year-long quest for a diagnosis began.
Double Aortic Arch or Allergies?
At ten months old Apollo made his first visit to Seattle Children’s Hospital. The ENT there said he had severe allergies (to milk in particular) and reflux. He told us to cut out all dairy and milk protein and to start him on reflux medicine, which we did.
RSV and Pneumonia
Less than a month later Apollo was sick again. I took him to the doctor where, within minutes of coming into the room, she sent us straight to the emergency room. Apollo was in respiratory distress and very, very sick. Once admitted to the hospital he was diagnosed with RSV and pneumonia. I was told by the doctors there that he was “much sicker than your average RSV baby”.
Apollo at One-Year-Old
By a year old it was clear we did not have a healthy baby. Apollo weighed 17 pounds 14 ounces. He had just barely doubled his birth weight. He had chronic respiratory issues and difficulty eating, sleeping, and gaining weight.
Adenoid Removal and His First Bronchoscopy
December 20, 2011, Apollo had his adenoids removed and his first bronchoscopy done. The surgeon (who also happened to be the head of otolaryngology) was supposed to check for any obstruction in his airway. That was the entire point of the bronchoscopy. He came out of the surgery saying things such as (and these are direct quotes):
“There is some slight narrowing, but not too bad.”
“It’s a bit abnormal.”
“It looks borderline”
“I’ve never seen a patient this old get diagnosed with a vascular ring and then need surgery.”
“If he has a ring, he’s probably grown large enough that it’s not a concern anymore.”
“We’ll consider an MRI or CT scan if his symptoms get worse.”
“Since he’s growing, he’s fine.” <— according to his records, Apollo was at one percentile on the growth chart!
Apollo Nearly Chokes to Death
The next day, at home, Apollo nearly choked to death on a piece of carrot. Ten-year-old Enoch had to call 911 and talk to the dispatcher while I repeatedly performed the Heimlich maneuver on Apollo.
After this experience, Chuck and I said enough is enough. We agreed to call our doctor’s office every single day until he either ordered an MRI or referred Apollo to a cardiologist.
Four days later, we had an MRI scheduled.
Diagnosis: Double Aortic Arch
January 18, 2012, Apollo (18 months) received an MRI and was diagnosed with Double Aortic Arch. It is a rare birth defect that comprises less than one percent of all congenital heart defects. Apollo was quite literally being strangled by his own heart. He needed surgery to repair his very unique heart.
Double Aortic Arch Division: March 2012
Apollo had a double aortic arch division on March 7, 2012. The surgery took place at Seattle Children’s Hospital. Everything went well and he was released after 48 hours.
After the Double Aortic Arch Division: April 2012
Six weeks post-surgery it was obvious something was still wrong. Apollo was choking less frequently, but still continuing to struggle to eat and grow. He had so much anxiety surrounding sleep after the surgery he was referred to a sleep specialist.
That doctor prescribed an anti-anxiety medication. This medication relaxed Apollo so much that he couldn’t breathe while he slept. The morning after a bad night where his breathing sounded like a balloon when you squeeze the end to let air escape, I called the hospital in tears. They scheduled an appointment for him to see a pulmonologist the next day.
Back to Seattle Children’s Hospital for Testing
Apollo was admitted to the hospital on April 23, 2012, for five days of testing. After an upper GI, swallow study, CT scan, rigid bronchoscopy and flexible bronchoscopy we finally had some answers.
More Answers, More Questions
Apollo was diagnosed with laryngomalacia both tracheomalacia (floppy larynx and trachea). His trachea has been crushed by his double aortic arch, and will never be normal. Instead of being round it is more “C” shaped.
Apollo also has misplaced artery in his heart which pushes against and compresses his esophagus. This means he has to physically force each piece of food down this throat. Not only is this physically taxing, but it also makes it difficult for him to breathe. It is too risky to repair with surgery. This particular defect is so rare, the doctors at Seattle Children’s have never seen it before. They have no idea what his long-term prognosis will be.
The black you see is his esophagus. It should hang more or less straight down. Instead, you can see the compression caused by the misplaced artery. Every bit of food has to be forced past that compression.
Apollo Gets a G-Tube
Because growth has been an issue for Apollo since he was three months old and he has a physical defect preventing him from taking in enough calories by mouth Apollo had a g-tube placed May 4, 2012.
A G-Tube to Help Apollo Grow
While the g-tube won’t “fix” his heart, esophagus or trachea, it will finally allow him to grow. Growth is key right now because as Apollo grows, his trachea grows. This will hopefully improve his breathing. At the same time, Apollo’s trachea grows more rigid each day (as it’s supposed to) but this means he’s in a race against his own body. We want his body (and therefore trachea) to grow as quickly as possible right now before his trachea becomes completely rigid, and therefore restricting his airway more.
More Bad News: Acquired Discontinuity of Left Subclavian Artery
What Happened to Apollo’s Left Subclavian Artery?
July 7th 2012 we saw Apollo’s cardiologist the first time since his vascular ring division post-op visit. This visit, we heard even more bad news. Apollo has an “acquired discontinuity of his left subclavian artery”. In plain English, that means his left subclavian artery no longer functions. A clip was placed on it during his double aortic arch division.
At this point, the doctor’s have no idea how his body is supplying blood to his left arm. In the long term, this could mean the loss of the use of his left arm. And if the blood is flowing up through his head, he is also robbing precious blood flow from his head. We were told Apollo will have to be “closely followed” by a cardiologist for the rest of his life.
September 24, 2012: Apollo Needs Surgery
An ultrasound of Apollo’s neck confirmed that he is drawing the blood flow to his left arm from his head and neck. Apollo’s pulmonologist said his airway is getting worse. It’s something we have noticed ourselves but been in denial over. After all, it’s been “fixed”. We have sought a second opinion from Boston Children’s Hospital and Texas Children’s Hospital and have spoken with a cardiothoracic surgeon at Seattle Children’s Hospital. He will be having this surgery re-done. It is just a matter of when, where and who.
Double Aortic Arch Re-Operation: Texas Children’s Hospital
After having sought a variety of medical opinions, we have decided to have Apollo evaluated at Texas Children’s Hospital. He will have a CT scan and Upper GI done October 24th and we will meet with a cardiothoracic surgeon on October 25. Depending on the results, we may have his surgery re-done in Texas, or we come back and have it re-done in Seattle. Apollo has been choking and vomiting 2-3 times a week and his stridor has returned.
Double Aortic Arch Division at Texas Children’s Hospital
Apollo had his second heart surgery on October 30, 2012. The surgeon at Texas Children’s Hospital was able to reconnect his left subclavian artery, remove more bands constricting his trachea and remove the diverticulum that was compressing his esophagus. Apollo developed chylothorax as a complication to his surgery and is currently on a fat-free diet as his body heals.
Update: March 2013
Apollo has recovered from his chylothorax. He is now back on a high-fat diet. He receives 50% of his calories through his g-tube and is currently receiving feeding therapy. Apollo still doesn’t sleep through the night and still struggles with anxiety around sleep.
Update October: 2013
Apollo has spent much of this summer struggling with low energy. We have had to increase his tube feedings again. His doctor discovered two heart murmurs that he didn’t have previously, but both have proved harmless (as confirmed by ECHO). We are still trying to get to the root of his fatigue. On the bright side, we traveled to San Diego late September where Apollo got to participate in Step 2’s Everybody Plays campaign where the used kids of all abilities in their product photoshoot. Kelle Hampton from Enjoying the Small Things was the photographer. I can’t wait to see where Apollo’s photos end up!
Update: June 2014 Apollo did well all winter long. He still struggles with fatigue and has recently begun snoring very loudly with obvious bouts of apnea. His most recent sleep study showed over 50 episodes of apnea (and that was on a night with no snoring). He is still tube fed and will likely have surgery to remove his tonsils and any adenoids that may have grown back. He has been having increased stridor in the last few weeks as well.
September 2014: Apollo Has His Tonsils Removed
Tonsillectomy for Sleep Apnea
Apollo had a bronchoscopy and his tonsils removed August 27, 2014. His ENT said his sleep apnea was caused entirely by his tonsils. He said they were so large that as soon as he fell asleep they collapsed inward and were actually touching and rubbing together. With this obstacle removed, we hope that he will begin sleeping better at night and eating better. Apollo still receives a third of his calories through his g-tube.
Staph Infection After G-Tube Removal
Four days after his g-tube removal we took Apollo to the emergency room in Seattle. The doctors did an ultrasound of his abdomen and found it full of fluid. They cut open the surgical incision and found his abdomen full of pus. They drained and cleaned the wound, leaving it open to heal, a process which was gory and took weeks. Click here for graphic photos of his staph infection recovery.
We appreciate any prayers on behalf of our son. Please share his story.
Resources for Double Aortic Arch and Vascular Rings
Medline has a great description of what a double aortic arch and other vascluar rings are.
Facebook has a couple of amazing support groups:
Swallow My Sunshine is a blog written by a mom with a little girl diagnosed with a double aortic arch.