Double Aortic Arch

Renee - posted on 02/04/2012 ( 21 moms have responded )

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Does anyone else here have a child with this. My 18 month old son was just diagnosed last month. He is scheduled for surgery March 7th.

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User - posted on 06/09/2014

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Thank you,Sharn. We have a Facebook group if you are interested in joining: https://www.facebook.com/groups/339823096046203/

Sharn - posted on 06/09/2014

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My son was one week old when his arch was discovered after he stopped breathing in the NICU...the arch compressed his trachea and thus he had to wear a trach for the first 18 mos of his life...he spent the first 2 1/2 months in the hosptial on oxygen...he came home on oxygene...he had more hospital stays then I care to remember...more surgeries to open up his airway again then i care to remember...his trachea was more then 80% damaged as an infant and thus he looked as if he was going to need a major reconstructive surgery at about 5 yrs...D was a premee 3lbs 11ozs...but now at almost 16 yrs old he is a very happy healthy high school athletic( basketball, and Football)...Drs told me that he would never compete in sports...yet he excels...they told me he would never talk or walk on time...yet he did and ahead of schedule...he still has a somewhat compromised trachea...it's mis-shaped, but his body adjust...I share all of this because this is not a death sentence...this is a very serious condition, but don't limit your child...my son's Dr advised me very early on to let my son set his own limits...he will tell me when he's tired, and his body will stop him from doing too much...from a mother who has gone though almost everything...things will get and be better....it's hard and the struggles will great at times, but it's oh so worth it...I truly hope this helps....


Sharn.....

Robyn - posted on 03/19/2014

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shame the trauma these poor kids go through is agonizing. and as a mother harder as we here to protect them ... glad its over and they can grow into happy healthy angels.

Renee - posted on 03/19/2014

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Recovery was long and hard and he was in a lot of pain. HE developed chylothorax after his second surgery. He was terrified to sleep after...

Renee - posted on 03/19/2014

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Every single doctor is handling these cases differently. There doesn't seem to be a "standard of care" established yet.

Robyn - posted on 03/19/2014

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how did you cope with him at home post op? I found it agonizing and couldn't sleep from the time he was in hospital till last month when his lung was fully reinflated.

Robyn - posted on 03/19/2014

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our surgeoun wouldn't do the op till he had the angio gram and echo. it was agonizing, but well worth it.

Renee - posted on 03/19/2014

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He is doing okay, but has a g-tube because he can't maintain his weight without it. No, he hasn't had an angiogram. He was diagnosed by MRI, then had a CT scan and ECHO before surgery.

Renee - posted on 03/19/2014

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Almost all of the kids in the group (unless they were diagnosed prenatally) have been given the run-around before being diagnosed. Most of them have done more than their share of suffering :( If you haven't already seen this, you may want to read it: http://bakersdozenandapolloxiv.com/apoll...

Robyn - posted on 03/19/2014

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did they do a angiogram before he had the thoracotomy? how is your little one doing?

Robyn - posted on 03/19/2014

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I am not a huge fan of face book. but would like to be in touch with other moms. I suffered and watch my child suffer for 3 yrs till he was diagnosed with a barium swallow by accident after vomiting bile for the 20th time with dehydration. its heartbreaking to see how many children have this problem. the surgery was hard waiting time and hard recovery . its strange to see how little they all are and how strong their little souls are to handle so much ...

Renee - posted on 03/19/2014

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Robyn- there are now two Facebook support groups if you are interested in joining. My son was eventually dignosed with a diverticulum and had to have the surgery redone eight months after the first.

https://www.facebook.com/groups/339823096046203/

https://www.facebook.com/groups/Vascularring/

Robyn - posted on 03/19/2014

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my baby had a diagnosis of a kommerells diverticulum with a double aortic arch in november 2013. we had a 4.5 hour op done to repair this and also have a nisan put in his stomach. after op his lung collapsed, but hes tough little man. and Thank G-d his is over the worst and we are dealing with asthma issues. no one realises how hard it is to have a baby that you know there is something wrong with and noisy breathing strange weird symptons and no sleeping!

Theld - posted on 12/21/2013

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My son is 12 almost 13 he was diagnosed early on. Within a month of his birth his diagnosis was clear. He has a double aortic arch, pulmonary artery stenosis, and at the time a large VSD. His symptoms as a baby was failure to thrive, sweating, lots of feeding issues, and cynosis. He weighed a little over 10 pounds at 8 months. We are so fortunate he has never had to have surgery believe it or not. Our son was truly a miracle! I still have cardiologist tell me my sons normalcy with what he has would be a best case scenerio with surgery. I know what it is like to have a sick child and be so unsure what will happen. It was heart breaking, everyday I would try to get him to eat even a little. He had very little strength when sucking. He took maybe a ounce and he would be Tuckered out. Since he couldn't eat failure to thrive was diagnosed and he began to receive services through ARC for speech, developmental, occupational, and physical therapy. At the time I thought why speech? However, she and the occupational therapist were by far the most helpful, and long standing in our journey. My son Simon, received these services till he was two. At eight months after many prayers, and crying myself to sleep we went to Riley's hospital in Indianapolis. What the Dr thought was a mistake on his tests were not a mistake but a miracle! A gift from God. No surgery needed, all meds discontinued, and today I have a boy that is as normal as my other. Although, my Simon John is a fighter, he seems a little more courageous to me; he smaller then many kids his age but not one single
symptom has returned. I'm grateful and I am blessed! I am posting this because even though Dr prepared me for a son with special needs, or him even dieing. He is here and has a purpose on this earth. I can only hope that this may touch a family, out there. I felt compelled to post because miracles are real, they happen everyday. We are just to busy to ask, see or believe. For more information about my journey with Simon John please feel free to email me at theld36@gmail.com I will continue to keep all of your families in thought and prayer. God bless!

Angela - posted on 11/13/2012

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Our little girl had the surgery at 18 months, back in March. She had reflux, and bad pneumonia that led to an ENT specialist, who found the defect in Feb. Post surgery, she gets sick very easily. I was hoping that post-surgery by now, chronic pneumonia or bronchitis wouldn't be an issue, but it is. We have chest PT every day. After every cold or nasty virus, it travels and sits in her lungs. Anyone else have pulmonology visits post surgery to figure out these issues? It's hard to wonder if they are separate issues, or tied.

Nicole - posted on 10/03/2012

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Hello Renee,

My son Liam (14 months) has a heart condition called tetralogy of fallot.He also had stridor when he was born and we soon discovered that after having rigid bronchoscopies and a cardiac M.R.I done that he was diagnosed with Double Aortic Arch - Vascular ring. he had the full repairment for his heart and D.A.A. He is now trached because he still had respitory issues after these surgical procedures. He also has a mickey button in his stomach for feedings.He receives OT, PT, and E.I. He's doing well as of right now and i thank god!

Renee - posted on 06/06/2012

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Dawn, the best thing I can do is direct you to my blog. I have been blogging in detail about his journey to help other moms. First check out: http://bakersdozenandapolloxiv.com/apoll... One the rest of my blog you can search the categories labeled: Baby 2010 or Congenital Heart Defect.

The surgery was okay. He was in a LOT of pain afterward. It was rough. They just discovered last month he also has an artery compressing his esophagus which has been causing his eating issues. They can't fix his esophagus or move the artery so he had a g-tube placed May 4, 2012.

Let me know if you have any specific questions and I will try to answer.

Dawn - posted on 06/04/2012

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Hiya Renee and anyone else...., My toddler is 2 in June and has been diagnosed with a double aortic arch too. She has a MRI next week to confirm what the surgeon will do. Then we get the date for surgery. I am wondering how your Son is now? and what he was like before surgery. The hospital has only told us how striaght forward it will be!!!!!!! I am crusing the internet for more info.....My little one has had breathing and eating issues from 6 months.

Dawn

Kelly - posted on 04/19/2012

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It is a rough road. That is so true. With us, Max's double aortic arch was found quickly and the repair was done right away. He has always been a noisy breather. When he was a baby, he sounded sick all.the.time. We called him our little dragon baby.

We have not had any issues with breathing unless he is sick and suffering from something respiratory related. Now we mostly hear the stridor when he is eating and when he is very active. At first, after the surgery, the docs told us that the stridor would most likely be gone by 2 years old. They thought his cartilidge would develop and strengthen his airway. Well, that was not the case. I've heard so many terms...tracheomalacia being one of them. But, basically where we stand now is that the lower part of his airway, where the constriction of the arch was, is still 80-90% collapsed. We are now just "waiting." The doctors HOPE that this will correct itself over time as he grows. We just have to monitor him and make sure that he is not inhibited from doing things. Right now he does get loud and works hard to breath with lots of activity but we just take "rests." I just keep waiting to wake up one morning and have him be all better. Wishful thinking, I know, but I can dream, right.

I actually found your blog the other day, before coming across this site. I sometimes wonder how many other families out there are dealing with this and want to search the internet for "hope" but also fear about the not-so-happy stories that I might come across...

Renee - posted on 04/19/2012

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Kelly- the surgery went well. BUT six weeks post-surgery he is still struggling to breathe, eat and sleep. It is a very rough road. He gets very out of breath when he plays or eats and I believe he may have tracheamalacia.

Kelly - posted on 04/19/2012

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Hello Renee,

My son had a repair done on a double aortic arch at 8 days old.

He will be 3 in June. He is doing well but we still have our struggles.

How did the surgery go for your son?

-Kelly

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