Apollo’s Story: Life with a Double Aortic Arch

Apollo was born June 26, 2010 by emergency c-section after experiencing a cord prolapse at home. {You can read the whole story here} He weighed in at a whopping 8 pounds 12 ounces and was declared perfect at the hospital. Apollo had trouble nursing from day one. He was tongue tied and had a frenulectomy at two weeks old. He was fussy baby that slept very little.  Despite all of our feeding issues he was gaining weight well. At three months Apollo weighed in at 13 pounds 4 ounces.

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 it never developed. His wet breathing (we would later learn this is called stridor) became constant.vascular ring, double aortic arch, failure to thrive 

Apollo finally developed a cold at four months old. He finally kicked it after two rounds of different antibiotics, but the stridor remained.

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. He would choke and gag on solid foods. 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.

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. He was hospitalized at 11 months with RSV and pneumonia where the doctors told me “he is much sicker than your average RSV baby“.

Diagnosis: Double Aortic Arch January 18, 2012 Apollo (18 months) received and 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 has been quite literally being strangled by his own heart. He will need surgery to repair his very unique heart.

Double Aortic Arch Division {March 2012} Apollo had a double aortic arch division March 7, 2012. Surgery took place at Seattle Children’s Hospital. Everything went well and he was released after 48 hours. Here are part 1 and part 2 of his surgery.

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.

Apollo was admitted to the hospital 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.

Apollo has laryngomalacia both tracheamalacia (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, it makes it difficult for him to breathe. It is too risky to repair with surgery. This particular defect is so rare, the doctors as Seattle Children’s have never seen it before. They have no idea what his long-term prognosis will be.

compressed esophagus, double aortic arch, vascular ring, esophagus CT image, g-tube, tubie, tubefed,

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.

G-tube placement {May 2012} 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.

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.

 

{Updated September 2012}

July 7th 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.

{Update: September 24, 2012}

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 an 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.

{Update October 9, 2012}

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.

{Update December 2012}

Apollo had a second heart surgery October 30, 2012. The surgeon at Texas Children’s Hospital was able to reconnect his left subclavian artery, remove more bands constricting his 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}

double aortic arch, vascular ring, g-tube, tube fed, toddler g-tube

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}

double aortic arch, beads of courage, vascular ring, tubie, tubefed, g-tube

Apollo has spent much of this summer struggling with low energy. We have had to increase his tubefeedings 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} double aortic arch, feeding tube, g-tube, vascular ring 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.

 

 

 

 

 

 

 

 

Update September 2014

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Apollo had a bronchoscopy and his tonsils removed August 27, 2014. His ENT said his sleep apnea was cause 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 recieves a third of his calories through his g-tube.

 

We appreciate any prayers on behalf of our son. Please share his story.

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