What is a Double Aortic Arch?
A double aortic arch is a heart defect where the aortic arch wraps around the esophogus and trachea, rather than running in front of it. This constricts the esophagus and trachea and, depending on the severity, can cause trouble breathing, choking on food, an inability to swallow food or liquids, reflux, and even a need for a trecheotomy.
Table of Contents
Apollo’s Birth: Cord Prolapse at Home to Emergency C-Section
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.
First Symptoms of Double Aortic Arch
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 developed his first cold at four months old and just couldn’t seem to get over it. He finally kicked it after several weeks and two rounds of different antibiotics, but the stridor remained even after he was well.
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. We got dirty looks every time we took him out of the house due to his loud breathing and cough. Every meal ended in screaming.
This is where our year-long quest for a diagnosis began.
Double Aortic Arch Misdiagnosed as 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.
I stopped eating dairy that day because Apollo was breastfed. I wouldn’t eat dairy again for over a year and Apollo wouldn’t eat it until he was in kindergarten.
Apollo’s First Hospitalization: RSV and Pneumonia
Less than a month after Apollo’s visit to Seattle Children’s Hospital, he was sick again. I took him to the doctor where, within minutes of entering 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 Apollo’s first birthday it was clear we did not have a healthy baby. Apollo weighed 17 pounds and 14 ounces. He had just barely doubled his birth weight. He had chronic respiratory issues and difficulty eating, sleeping, and gaining weight.
He still spent much of the day crying and whining. He was miserable. We were miserable. He could only eat 2-3 bites of food per meal.
Adenoid Removal and His First Bronchoscopy
December 20, 2011, Apollo had his adenoids removed and his first bronchoscopy. The surgeon (who also happened to be the head of otolaryngology) was supposed to check for any obstruction in his airway. His pulmonologist wanted him to check for a vascular ring or any other type of blockage or issues with his anatomy. That was the entire point of doing 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.
Here you can read part 1 and part 2 of his surgery. 
Complications After 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.
Double Aortic Arch Division without Removing the Diverticulum
Apollo was diagnosed with laryngomalacia both tracheomalacia (floppy larynx and trachea) during his bronchoscopies. His trachea had been crushed by his double aortic arch, and would never be normal. Instead of being round it is more “C” shaped.
Apollo also has a misplaced artery in his heart that 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 in this image is Apollo’s 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.
*This is what the cardiologist at Seattle Children’s Hospital told us in April 2012. Turns out the surgeron had not removed the diverticulum during his double aortic arch division, leaving an artery to still compress his esphogus. At the time we were told a repair would require open heart surgery and the doctors did not belive it was worth the risk. Turns out, they were wrong. Very wrong.
A G-Tube for Double Aortic Arch
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” Apollo’s 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 for the first time since his vascular ring division post-op visit. During 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. The clip placed on the artery during his double aortic arch division cut off the supply to this artery.
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 on 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.
Tonsillectomy for Sleep Apnea: September 2014
Apollo had a bronchoscopy and his tonsils removed on 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 obstruction 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.
G-Tube Removal
Apollo had his g-tube surgerically removed in November 2016. Unfortunately he had a very rough recovery and ended up contracting a staph infection.
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:
Double Aortic Arch/Vascular Ring Support
Swallow My Sunshine is a blog written by a mom with a little girl diagnosed with a double aortic arch.
Hi,
I heard about your family through a family friend… You know her through this blog. 🙂 I live in Alabama, and my son had a vascular ring caused by a double aortic arch. His non-dominant side (the left side of the arch) also had blood flow. He had the surgery November 29, when he was about four months old, and it was a breeze! I wish I had known someone (anyone!) who’d had the surgery before, who could have told me that hopefully it wouldn’t be that bad. My son had the surgery Tuesday morning and we were discharged Friday afternoon. My e-mail is lindsaydiffee@ymail.com – e-mail me and I can tell you lots more. I see that you know someone who had this surgery done at age 10. You already know some about it, but maybe I can give you a younger-child perspective on the surgery. Incidentally, my son was also born via a (semi-) emergency c-section due to cord issues. I could write all day, but e-mail me and we can talk that way. I can also give you my number if you want. -Lindsay
Just wanted to post a message to say that I’m praying for Apollo. I actually found your blog a couple of years ago, I think it was a little while before he was born, so I’ve followed all of Apollo’s health difficulties but I’ve never posted before (I thought it would be weird because you don’t know me and I just found your blog on Google). Hope that the surgery goes well and he recovers quickly.
We’ll keep him in our prayers.
Heyya Renee ~ I added you to a great prayer circle that I belong to with some mighty prayer warriors. Looking forward to seeing the glory of the Lord shine in this trek of the journey that you are all about to embark upon. Know that God has you all in His hands. Since you all now live in WA… even your parents… will you ever be visiting your brother here in Alaska? Cheaper for him to come there to visit, eh? 😀
Renee and family ~ I have Apollo in my prayer book and am praying daily as Wednesday approaches. May God guide the hands of the surgeon(s), give them wisdom, and bring complete healing to little Apollo! May he fill each member of your family with His peace as you walk through this season!
Janie \o/ ♫
My mom just told me about Apollo yesterday. I am passing on the prayer request to the women in my community group. We will all be praying for a good outcome, speedy recovery and peace for your family!
Just finished praying for this wonderful little boy. May God be with the doctors, nurses, and anyone involved in his care. May his mom and dad feel God’s arms wrap around them and give them assurance and God is watching over their little boy.
Hi There…felt compelled to comment after stumbling across this blog. I had surgery to correct my double aortic arch 25 years ago, when I was just 3 months old. Though I did have ongoing bouts with pneumonia and 2 incidents with croup, I have continued to lead a full and normal life. Though I’ve noticed that many websites suggest future limitations on exercise and dietary restrictions, I have not experienced any such need. I was 4-year college athlete (women’s lacrosse), and continue as an avid runner. I have been diagnosed with cough-variant asthma, possibly a lingering post-surgical outcome. However, it’s been well controlled with an inhaler and self-monitoring.
Anyways, I just wanted to leave a note and wish your family well. I’m sure it’s a scary time dealing with a sick child, however the worst should surely be over! Clearly I can’t speak on behalf of everyone who has ever been diagnosed with DAA, but I can say for me, this medical anomaly has not hindered my development or my life. All the best to your family and little one!!
Stumbled across your blog today and hearing your story helps. my daughter has had some of the symptoms Apollo has and the lack of diagnosis was starting to drive me mad. Your story gives me hope that one day we will have answers too. my daughter us 17 months. After birth she lost a whole pound and almost ended up back in the hospital. After 1 month was hospitalized for bronchialitis because of retraction but sent home the next day being told she was breathing fine. She has always breathed so loud everyone can hear it. Always been s very slow eater even w a bottle had reflux as z babyand even now has trouble rating….chokes vomits frequently but drs think she doesn’t seem to “struggle” breathing just that she has allergies or abad gag reflex shes In the1st percentile for weight but 70th for height……has had chest and throat xrays and today just finished with a second ent visit which again determined no issues w adnoids voice box etc…. So next we are off to mass general Boston to see pulmonary specialist, ent, etc etc all in one building and possibly an MRI or bronchisl scope….. I fear the worst for my sweet happy girl but youtlr story helps… thank you.
Deanna, I have heard great things about Boston…I hope you find your answers there. It was an MRI that found the double aortic arch and, more recently, a CT scan the found the second heart defect (the vessel that is compressing his esophagus). He had x-rays done and had seen an ENT and pulmonologist numerous times prior to his diagnosis. My biggest word of advice is to PUSH for the tests. Our son would still be undiagnosed if we hadn’t pushed so hard. I am so glad you found my site…I try to blog very specifically about his issues, because I know how frustrating it is and how lost you can feel. Feel free to contact me if you have questions in the future.
I stumbled across your blog through Pinterest, and I want to thank you for sharing Apollo’s inspiring story. I am a speech-language pathology grad student at the University of Washington (yay Seattle) and hope to work with children who have feeding difficulties. Apollo sounds like an amazing little boy, and I find your continuous perseverance to get a true diagnosis and then work through those challenges just amazing. I can’t wait to keep up with your beautiful blog and the strides Apollo makes as the years pass!
Hanna- thank you for your encouraging words. I am so glad you found my blog…I want every doctor, nurse and speech-language pathologist to hear his story. He was overlooked and shoved aside far too long. I hope that someday his story will help some other kid…
Renee, first I would like to congratulate you on your first place finish as the Top Mom of Teens on Circle of Moms. You truly deserve it! Second, I want to tell you how happy I am that I took some time to read your blog. It’s beautiful, wonderful and inspiring. Apollo is certainly a precious angel that was put on this earth to amaze people and to remind people how important it is to count your blessings and be truly grateful for them. Thank you for sharing your life with the world and I look forward to your posts. =)
Take care,
Tanya. (aka Comic Strip Mama)
Renee,
Your story was brought to my attention by a friend out in Seattle. Sending lots of positive energy to you and your family!!
We just learned yesterday that our baby girl has a vascular ring, so we are just beginning the journey. She, along with her three siblings, also have myotonic muscular dystrophy. Here is our story http://www.caringbridge.org/visit/abbene.
I’ll be thinking of you!
Take care,
Liz
Liz, thank you for commenting here, and feel free to email if you have any questions. There is a support group on Facebook, too if you are interested. I will be sure to check out your baby’s caring bridge site.
My daughter had this surgery when she was 16 months old in Portland, Oregon. She is almost 18 now…..it’s been tough. Lots of eating problems respiratory problems and such. Feel free to email me of you would like! Prayers for you and your family and especially Apollo!
Tracy- thank you so much for commenting here. I’d love to hear more about your daughter, but can’t find your email. Could you send me a message: bergerondozen (at) yahoo (dot) com. Thanks 🙂
I am praying for your sweet Apollo! God is able to heal and do the miraculous. Just keep praying prayers of faith and speaking the Word over him and don’t stop until He is better. He is able!! Praying!!! Much grace and love to you!
This is an inspiring story and it’s amazing how brave and able you are in the midst of it all. Thank you for sharing Apollo’s story!
Contined and prayers and lots of hope for answers and fixes in Texas.
I have so many things that I could say to you and even though i do not know you, I am praying for you now. My Grandaughter went through similar situation at Childrens at 3 months old with Cardio myopathy. She went eventually went through a heart transplant when she is 6 months. She was very sick for the first few months of her life but is now doing great. I have great faith in the abilities of the doctors at Childrens and I am sure in the Texas clinic also. God will be at his side. These children are true miracles of him of God and he will look after him to make sure that all is well. the Best to you and your family during these times.
Hello. I was looking for large family recipes online and came across your blog. Apollo is a beautiful little boy! And such a great name, too! I am glad that the internet directed me here so that I can now pray for Apollo and your family. Hope things get better soon….
Not sure if he is on a feeding tube still? I have a friend with a 2 year old with a tube and she introduced me to Tubie Friends http://www.tubiefriends.com/ – You have probably already hear of them, but if not, Apollo might like them 🙂
Thanks! Apollo has a Tubie Friend. They were so helpful and awesome. They rushed Apollo’s order and I met them to pick it up as we were headed to the hospital to get his tube! We are so grateful to them.
Hi. I’ve been reading Apollo’s story. My daughter is in the hospital and will have her double aortic arch repair soon. She is only 3 months old, but my fear is that we don’t know if her arch has caused any permanent damage to her esophagus or trachea. Please contact me! I would like to know more and prepare for any complications that may happen.
Email sent 🙂
Hi! I did not receive any email 🙁 Please resend it!! My baby had her vascular ring repaired on Friday, but now having respiratory issues. Tomorrow 3.18, she will have her bronchoscopy done to see what is going on.
I’m sorry, I didn’t see your first comment! Sometimes they get buried. I’m off to email you now, be sure to check your spam folder, just in case!
My daughter was four month old at her surgery. It will take about a year for everything to get back to normal. Thanks god she is five today and leading a normal happy life.
I just hop-scotched over here from, from the Bethany Christian Services FB page and read your adoption story about Avi– and then saw this page w/ Apollo’s story– I said a prayer for him and for your awesome huge family!
We’re going through our first home study so we can adopt our first child — hopefully in less than 2 years, but we’re just trusting in God’s timing. Thanks for sharing your stor(ies!)
Thank you so much for commenting. I love to share about our adoptions and Apollo’s story- since he went so long without being diagnosed. Best of luck with your adoption!
I came across your blog while researching melatonin use in toddlers, which then brought me to Apollo’s story. I just wanted to let you know that I will have Apollo and your entire family in my prayers.
Thank you so much!
I just sent a friend your link. I’ve followed your blog since before Apollo but she’s now facing numerous tests to figure out why he ‘failure to thrive’ and they’re exploring feeding tube possibilities. I hope she finds, at a minimum, solace in knowing other children have been through it and are still fighting hard.
Thank you, Jessica. Let her know she is more than welcome to email me if she has questions. The decision to place a feeding tube is a scary one.
They think it’s a vascular ring. They’re going to be doing an MRI to confirm. Amazing that something that seems to be fairly unusual has happened to two people I ‘know’.
It has to do with how “small” the world becomes with the internet. Heart defects happen in 1% of babies, less than 1% of *those* will be a double aortic arch. There are a couple of other variations of vascular rings as well. We also have a facebook group: https://www.facebook.com/groups/339823096046203/
Hello I have just read Apollo’s story. My 3rd child Abigail age 3 has just recently been diagnosed with vascular ring and double aortic arch. It is “nice” to find another Christian, homeschooler, large family with a child in the same position. How is Apollo doing? It sounds like he has had it really badly. My Abigail was very poorly as a baby, stidor, needing oxygen when had a cold, blue episodes etc, but is doing alot better now but still has stridor when crying, got a cold, exercises. She is having surgery in September at Alder Hey Children’s in Liverpool, UK. It’s very daunting, but trusting in the LORD for his strength and peace. Love from England, Kirsty x
Kirsty, we have a Facebook group: https://www.facebook.com/groups/339823096046203/ . Please come join us? Apollo is doing a good as he’s ever done. He still has the feeding tube, but his stridor is mostly gone. Thank you for sharing! I’m off to check out your blog now.
What an amazing little boy. He is precious! I happened upon your blog post while doing internet research on vascular rings and heart surgeries on infants. We just learned our 11 month old daughter may have a vascular ring after initially being diagnosed with laryngomalacia, stridor, and very persistent reflux. Currently she weighs 15 lbs but was also 4.8 lbs when we brought her home. Her stridor is rapidly worsening and we have been in denial over this the past few months. We will undergo all the testing early next week and are in TX. Was there a particular cardio vascular surgeon that you loved? I’m still hoping maybe its just her reflux but her ENT cleared her of laryngomalacia recently and I’m just not sure what to think.
If you have any advice I would love to hear it, and I am praying for your sweet Apollo.
Thank you
Tatum Schwerin
tatumschwerin@yahoo.com
Thank you so much for contacting me! There is a double aortic arch/vascular ring Facebook group where you can get plenty of information and ask questions: https://www.facebook.com/groups/339823096046203/ I’m going to send you an email too, so you may want to check your Spam box, just in case.
There is a facebook group for double aortic arch/ vascular rings: https://www.facebook.com/groups/339823096046203/ I’m sending an email too, so you may need to check your spam folder.
Poor Appolo! My son had the repair right after he turned one. He thankfully is fine after. Still small, he’s 8 and not even 50 lbs. he wasn’t even 14 lbs at a year. Never did the feeding tube thing. He was 2 months early….we were constantly told when I constant,y brought him to the doctor for vomiting across the room, breathing like darth vader and not growing that it was because he was premature. Very frustrating. He was always sick too the first 2 years. He would get a cold, end up in hospital, or just sick for a long time..anyways, I hope your precious guy gets some help.
Cindy- glad to hear your son has such a success story!
hi
Hi Cindy I am reading your son’s story, like I am reading my own son’s. He was diagnosed with a double aortic arch in 2010 at 14months old. After having 25 hospital admissions all for upper resp infections. He had loud stridor breathing which has gotten better with the repair. He never had growth issues but I always had to feed him very carefully. It finally was diagnosed after refusing to leave the hospital after three weeks. They kept telling me thast my son had tracheasmalcia and that he would out grow it by 12-18months. The repair was done which he has gotten some what better but I was not completely convinced still having to be on oxygen with a cold which is still very frequent. So after asking ENT to repeat Bronchscopy and Imaging and being told there is no need “it is, what it will be” (New York)I took my son to Cincinati childrens hospital two weeks ago to the nations best airway expert Dr Robin Cotton. A CTA was done, and I am being told that my son has as circumflex aorta which is compressing his carina which leads into the bronchi causing chronic lung disease and still compressing the trachea and causing all the illnesses.You mentioned that your son has a C shaped aorta which is the circumflex aorta. How did they fix this or did they? I will have your family and your son in my thoughts and prayers. Could you please give me an update on how your son is doing. y email is jennahrgirl@aol.com i also requested a facebook access to the Double Aortic arch page.
Hi! I have a blog where I spotlight children with special needs…I can see that you’re trying to spread awareness about your sweet Apollo. If you’re interested in participating please let me know! Feel free to check out the blog and past spotlights!
Hugs,
Miggy
http://www.thislittlemiggy.com
Thank you! I’ll be sending you an email.
Hi there! Ijust saw your story on Shine and what drew me in was Apollo’s heart defect. My youngest was also born with a Double Aortic Arch and hers created a vascular ring around her trachea. She too had the wet sounding rasping and cough. She also had RSV and had frequent chest xrays as she always sounded like she was drowning. We were in and out of the hospital and it still took them almost 18 months to figure out what was wrong. We were blessed that hers was fixable and there were no other problems. She had surgery just before she turned 2 and is now 6 and doing great.
I had never heard of anyone else having this so wanted to reach out. Your son is a handsome guy and looks like a joy!
Thank you for commenting, Holly. I believe you found our Facebook group, if not, let me know. It is so great to “talk” to other parents with kids with double aortic arches. Yes, Apollo has permanant damage to his trachea from the vascular ring.
I wanted to say your story hits home for my family and I wish you all the Best in your future. My Son Vladimir had a right aortic arch and your story sounds very similar to ours. He just had his most recent Surgery In St Louis, (we are from PA). Glad we are not alone. If you every Get a chance Look Up Peter Manning of the St Louis Children’s Hospital He changes our Lives forever.
Thank you Rebecca! It is always nice to hear from another family dealing with this. We have a Facebook group (search Double Aortic Arch) if you want to join our support group.
I sent my request this morning. 🙂
For his fatigue, it might be worth looking up adrenal fatigue, or http://www.adrenalfatigue.org- when someone has chronic health problems, it taxes the adrenals, and when that stress continues past what the body can handle, adrenal fatigue sets in. There are tests for it, usually 4 saliva tests taken at different times throughout 1 day, then sent to a lab for analysis.
Thankyou for your blog! Again I stumbled upon it whilst trying to research vascular rings. My 6 year old is about to have a cat scan to see how his is presented. I have to say we have had no problems with eating, it was a persistent barking cough that drove me to Dr’s /specialist etc,.. Of course laryngeal Malacha and other terms were thrown around but they all looked at my fat toddler and assumed it can’t be that bad to warrant any further research, I ended up having to take videos of him coughing, to get his breath! Eventually i gave up until when he turned 5 he had surgery for placement of bilateral Grommets. I begged the ear surgeon to pls look down his throat as well to see what he could see, luckily he did but unfortunately found a vascular ring!
Please can you give me any feed back -technical terms, tests that you pushed for. I am hoping to turn up armed. 5 years of pushing and searching for answers has been exhausting. We live in New Zealand and there is really only one children’s hospital in the entire country, I wonder if the condition is so rare whether anyone has even performed the surgery there we would be prepared to travel to the states to get it done.
And of course three cheers for appollo I hope you get some answers and solutions soon! God Bless
So glad you found me, Paula. If you are on facebook, we have a group (serach double aortic arch). I’m about to email you.
I emailed you recently but heard no reply. I was born with a doule aorta and in 1952 at Cleveland Clinic I had 2 surgeries to correct it. I am no 67 years old and have lead a normal life…….I can’t understand why your son can’t be fixed if they could 60+ years ago. Just sayin. You have my email if you want more info. SueB
Thank you Sue! It is so encouraging to see people doing well after this.
My husband told me about your blog. I was actually thinking about starting a blog about it myself. Our daughter is scheduled for surgery on her double aortic arch on 11/25. I am terrified. I have been reading about all the post op issues people have had. Our doctors have said she should recover and grow normally without any further issue. I guess I thought this would be an easy fix and everything would be ok. Not so sure now.
I don’t want to worry you, but we were told the same thing. One surgery and he would be basically “fixed”. Not only has this not been true for Apollo, but it hasn’t been true for most of the kids on our Facebook group either. Keep in mind, the surgery itself is fairly straightforward. If you have Facebook please come join us! You can get lots of support over there! https://www.facebook.com/groups/339823096046203/
Hi there, I feel so lucky to have found your page today. My son had DAA fortunately diagnosed very early as he stopped breathing in hospital the day we were to return home. He had his surgery aged 2 weeks old which went well and we were told he was fixed. He has struggled with respiratory problems ever since and after seeing 2 different pulmonologists who tell me he has asthma but are unable to explain the many pneumonias and constant cold symptoms he has had in his short life (he is 5), I decided today to go back to the beginning and see his cardiologist. I have requested to join the Facebook page and would love to get in touch with you. My email is Lucystore@me.com. Sending love and prayers to you and Apollo. Thank you so much
Thank you, Lucy! I am so glad you found the Facebook page. I am in New Zealand at the moment so have been on the computer very little.
Hi there, iv stumbled accross your blogs a couple of times now upon research on my childrens conditions. We live in the UK. I have 3 children. My youngest born 6wks premature diagnosed with a heart murmar and jaundice at birth. At 4-5weeks he was diagnosed with servere apneas caused by gastroesophageal reflux disease and another then unidentified issuse with feeding and breathing so he was refferred to an ent. An mlb confirmed serve tracheomalacia which a few weeks later at approx 3months old after episodes of bronchitis and croup he deteriated and ended up in picu. They confirmed by ct scan he had a double aortic arch, which was then repaired. Complications led to pneumothorax and chlyophorax. After surgery he had many months of complications with feeding and had a ng tube in for 8months. Luckily we have not seen that back in ever since he had it removed. He also has asd of the heart which we were told were starting to get better. He is now 19months old. Currently worsened strydor and he has episodes of reflex anoxic seizures which can sometimes stop him from breathing. He had another mlb and ct scan a few wks ago. Doctors suggested it looks as if his daa is starting to fuse back together again and the team is in talk of a 2nd daa repair. My second son also has tracheomalacia caused by inominate artery compression. Doctors are also in talks about surgery for him. How is apollo now?
I also have a facebook page called; bronchomalacia laryngomalacia tracheomalacia awareness & support (uk based)
Please feel free to visit our page. We have found many facebook likers with the same condition. Hope you dont mind me writing. I will pray for your family and wish you all well for the future. Carly
I just ran across your fascinating blog while searching for something completely unrelated, and from it stumbled on your page about Apollo. What a strong little guy, and he reminds me so much of our 3.5 year old son… both in looks and in nature. Thanks for sharing your story, and tell Apollo he’s got a bunch of folks here in Texas thinking of him.
Hi, I’m glad to see Apollo is doing well! I wrote on your wall last year when my daughter got her arch repaired! She is doing well, but recently got her PEG tube changed to the MIC-KEY, which I’m loving. She still have feeding issues, a lot of gagging, not chocking though. Also, she is developmentally delayed, she is 14 mo. and can’t sit on her own, crawl or walk yet. Please, give me some advices about feeding and how to deal with the gagging reflex! Thank very much!!
Enil- feel free to email me. I’m happy to help in anyway I can.
You guys are amazing! Never forget it!
Hi, what a pleasure to find this site. I am so happy your son is doing so well. My son Eli was diagnosed with double aortic arch and vascular ring last summer and just had heart surgery 2/27/14 follow by a second surgery on 3/5/14. You are the first person i know with another kid with double aortic arch. That’s why it is such a pleasure to find your website.
Isabel
Greetings from Cape Town, South Africa, Double Aortic arch is so uncommon that it almost always goes unnoticed by Doctors. My son only had his discovered at 5 weeks after tests and tests. He will be 5 this year, all thanks to God. Thank you for sharing your story, so similar, it had me replaying the last few years of our hospital life all over.
Hi there! Thank you for posting your sweet sons story. I just gave birth to my third little boy three days ago. He was 8lbs 7 oz and looked healthy as can be! About 10 hrs after his birth we started to notice his breathing was labored and sounded wheezy. We called the nursery nurse and they immediately called the Dr in to evaluate him. From there we got transferred to the NICU and the cardiologist just determined yesterday that he has a double aortic arch. At birth he started off crying well nursing and feeding then on day 2 had a horse cry and by day 3 they had to out a tube because he wouldn’t eat thru a bottle. We are now looking to be transferred out for surgery. We were thinking Texas Children’s because we’ve heard it is one of the best and we live here in Texas. Any advice you have or anyone that has gone through this would be very very appreciated.
My email is summerngarcia@gmail.com
God bless you!!
Praying for Apollo! What a story, what a tough guy! Our God is so able. I see Apollo as a survivor. Nothing can stop him, because it is God’s plan to keep him here on earth for a mighty work! Apollo shall live and not die and proclaim the works of the Lord with a long, healthy life! So be it.
My son’s case is ALMOST exactly your son’s. Luke was diagnosed with a mirrored heart, double aortic arch with a vascular defect ring. He had surgery at 7months old to release the ring. We still don’t know how to fix the choking issues thought. What do your drs say about the vessel that is compressing his esophagus? There telling us that he will just have to eat soft foods and hope to grow out of it as he gets bigger. We will be getting a second opinion with Boston drs.
Thanks for contacting me! In my son’s case it turned out the doctor left a diverticulum (a blood-filled pouch) which was causing the compression on his esophagus. He had it removed in 2012, freeing his esophagus. Good for you for getting a second opinion. Boston is great. Also, Dr. Mackezie at Texas Children’s Hospital has the most experience re-doing vascular ring surgeries.
Hi!
My name is Caitlin and I found out today my daughter has a double aortic arch. We’re only 23 weeks pregnant. I’m seeing a cardiologist at Vanderbilt next week but would love to hear from a mom. How did you cope? What’s been a positive in your life since finding this out? I’m scared Down syndrome will also be something because I know this is rare normally but not in chromosomal syndromes. Any support would be welcomed. You’re son seems like he is a fighter and I’m keeping y’all in my prayers.
-C
Hello, I am reaching out to see if there is anyway I can speak with you over the phone? My son was diagnosed yesterday with a vascular ring, and it’s been very hard to find much info on this. I’d love to chat.
I have a now 11 years old son who had dual aortic arch surgery at a week old; very happy to talk to you about it – my email is lucystore@me.com
Kiara, I am more than happy to talk to you by phone. I am in New Zealand until 8/24. For now you can email at littleearthling@yahoo.com
Hi. This is weird to write. My younger brother was born with this condition back in 2001. He had surgery at approximately 10 months old to correct it. The doctors told my mom they had never experienced it before in their lives, only one doctor had even read it ever before, and his entire early childhood was submitted to colleges and textbooks so more future doctors could know it existed. I’ve never met anyone else thats had a child with it. Im not really sure what else to say…
Thanks for sharing! How is your brother now?
I’ve have stumbled across this thread. I got diagnosed at 36 with a double aortic arch and a vascular ring. I was diagnosed with server asthma when I was younger. I became so I’ll my respiratory doctor sent me for a ct scan and everything showed up. I had my surgery 13 years ago this April. I was the oldest person my surgeon has ever operated on. I’m no left with tracheomalacia and I’m not very well at the moment with an ongoing chest infection.