Apollo’s Story {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.

vascular ring, double aortic arch, failure to thrive

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. He got a cold that never quite went away. 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“.

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.

Update 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.

Update 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.

Update 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. 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!

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

72 thoughts on “Apollo’s Story {Double Aortic Arch}

  1. 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

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  3. 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.

  4. 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? :D

  5. 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/ ♫

  6. 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!

  7. 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.

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  9. 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!!

  10. 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.

  11. 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…

  12. 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)

  13. 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.

  14. 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 :)

  15. 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!

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  17. 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.

  18. 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….

    • 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.

  19. 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.

      • 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.

  20. 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!

  21. 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.

  22. 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’.

  23. 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

  24. 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

  25. 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.

  26. 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.

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  28. 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.

  29. 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.

  30. 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.

  31. 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.

  32. 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

  33. 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/

  34. 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.

  35. 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

  36. 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.

  37. 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!!

  38. 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

  39. 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.

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