Wednesday, August 19, 2009

The Story of Our Heart Baby

Braden (L) & Brenden (R)

Brenden Ashton was born on November 24, 1993 at 12:10 AM weighing in at 5 lbs and 17" long. His identical twin brother, Braden Aloysius, was born at 12:11 AM and weighed in at 4 lbs 11 oz and 18" long. Both of these amazing, and feisty, miracles gestated skin to skin as Monoamniotic/Monochorionic, or MOMO, twins.

For 35 weeks they created intriquite knots in each others umbilical cords (I'll find the photo and post it one day), had amazing wrestling matches, sucked on each others hands (and feet!) and gave each other black eyes as they fought for wiggle room.

Brenden loved to kick Braden up into my ribs and, wouldn't you know it, just as Brenden tired of playing trampoline on my bladder, Braden would issue a swift knee to the chin and the wrestling match would start once again.

Little did we know that they weren't exactly "identical". Brenden was hiding a little secret that threatened his life. In these photo's you would never know that he was sick and we didn't know how sick he really was.

After eleven and a half years of not knowing what was wrong with our son, wondering if it was actually me (his mom) who was sick, second guessing my instincts and being told "He has asthma" over and over again, our son was diagnosed with a rare congenital heart defect known as a Double Aortic Arch or Vascular Ring.

Brenden, our oldest son (by one minute), seemed to have every test, illness, medication and diagnosis known. He received two sweat tests because the pediatrician was sure he had Cystic Fibrosis. From just a few weeks on, our little guy would wheeze, choke on food, throw up, cough and have stridor. Nothing helped him. Without going into too much detail, thus making this blog way too long, here is a list of things we were told from birth to diagnosis:

We were told Brenden had/Brenden was given:

*Milk Allergy (infancy) and was put on Soy formula and then Nutrimagen.
*Given a scope and told he had a narrow esophogus and he would grow out of it by 1 year.
*Pre-diagnosed with Asthma, but told he was too young to really give a diagnosis.
*Given gobs of medications for asthma.
*Allergy testing
*Hospitialized with pneumonia at age 2.
*ER and InstaCare visits for steroids and nebulizer treatments.
*Two sweat tests to rule out Cystic Fibrosis.
*Enough x-rays to light up California and even one where his twin brother helped out.
*A distraught mother who knew something was wrong, but nobody listened to her.
*Coughing fits that would last hours and usually ended in vomiting.
*Choking on small pieces of food, but we thought he wasn't chewing properly. After repeating this meal after meal we were upset and would get upset with Brenden for not chewing his food. I still feel horrible for being angry/scared/frustrated with him at the dinner table. Poor guy!
*ENT visits
*Strangers who thought he was "really sick and should be at home!" Uh, thanks.
*Teachers who called numerous times a year in regards to Brenden's coughing fits.
*Many missed weeks of school.
*Had this virus and that virus.
*Chronic Bronchitis
*Chronic Sinusitis
*Seasonal Asthma
*Lung sensitivity to cold air
*"He probably makes too much mucous." -PCMC ER Dr. when asked "If you can't find anything wrong with him, then why has he sounded this way since birth?".

That last one (in bold) was actually my final straw. From age 8-11, I had resigned myself to the fact that Brenden suffered from asthma, even though I really didn't feel right about it. Nobody listened to me and everyone shrugged off his symptoms. I figured I was the crazy one. Around 11 years of age, Brenden began suffering from unexplained migraines and I rushed him to the children's hospital to be seen. They made him put a mask on because he sounded so sick. After a CT scan of his sinuses and an x-ray of his lungs, we were told nothing was wrong. I then went home, bypassed our now ex-pediatrician and called what I thought was the PCMC neurology department and scheduled an appointment. Of course it was three months out, but I was determined to find some answers.

A couple months later I received a packet in the mail from PCMC with papers to fill out for his upcoming appointment. I was a bit dissapointed when the paperwork was for the Pulmonology department, but figured it was better to be seen by someone now than to cancel and have to wait more.

On July 27, 2005 Brenden and I went up to the hospital for his appointment. I spoke with the nurse about his history, answered tons of questions, told her I just wanted some answers. Brenden was given PFT testing and a few other things. When we finally met Dr. U we answered his questions and I told him about Brenden. He told me that Brenden had "Seasonal Asthma" and tears began to flow down my cheeks as I struggled not to sob at his feet. Dr. U asked me what he could do to make me feel better about this appointment. I looked at him and pleaded with him to just "Start over. Do all the tests that you would do if Brenden had never seen anyone about the symptoms I described."

You see, on July 27, Brenden was not suffering from a cold and he was not sick (amazingly!) that day. The stridor was not heard and he was not wheezing. A great day for him to be stuck in the hospital, eh? The only test that puzzled Dr. U was the Pulmonary Function Testing (PFT). Brenden had pretty low levels to begin with, but when given puffs of Albuterol (the drug he had been on since he was a toddler) his levels would become worse. Dr. U said that's unusual as Albuterol opens up the airways, but on Brenden it was closing them and making it worse.

Dr. U wrote Brenden three prescriptions. One was for blood work, one for a CT scan of his lungs and one for a sleep study. The sleep study would need to be scheduled for a later date, but the other two were to be done immediately. I was shocked, to say the least. I was told to bring Brenden back in the fall (when he got his first cold). We said goodbye and I thanked him for the tests and went on our way. Looking at those two prescriptions I remember asking myself, "Which one should we do first?"

We found our way to radiology, signed in and waited. Brenden and I were taken to a large room and ushered past a small control room towards the big CT machine. I sat in a chair against the wall and was draped with a heavy vest. Brenden was such a trooper and hopped up on the table. They explained some things to us, administered the contrast into his veins and then we hear this loud whirring sound. My eyes are fixed on my son and this thing engulfing his tiny body and whirling around his body. I wanted them to find something and kept repeating softly, "Please find something. Please find something."

Photos taken during his first post-op visit.
I had to get a photo of the machine that was not blind to a mother's plea.

Just three minutes later the whirring slowed down and stopped. I was puzzled because it was so short. I looked at my son trying so hard to stay still even though the contrast was coarsing through his body and he felt like he was burning, then I glanced into the control room to witness a bunch of people in white coats huddled over a monitor and Dr. U was right there with them. My first thought was, "Why is Dr. U there? We said goodbye.". I looked at Brenden, then the nurse and suddenly (in my peripheral vision) I saw Dr. U walking towards me. I remained seated, too numb to move or speak at what was being said. My mind was racing, trying to remember where the aorta was from and as Dr. U went on, I felt like I was having an out of body experience. I was hearing what he was saying and I could see him, but my mind was still on the aorta. Within seconds I remembered it was the heart. The heart? What? We're not here for his heart. There must be some mistake. They were viewing his lungs, not his heart. These are the things that went through my mind. At some point, my mind and body were once again in sync and I was asking questions instead of nodding my head.

On August 22, 2005, our oldest son, Brenden, was admitted to Primary Children's Medical Center for an operation that would save his life. The surgeon Dr. K, said that when he made the cut to release the esophogus and trachea, they popped out like a tightly wound spring. They were finally free. He also noted that Brenden didn't have a dominate side where one would be larger than the other. Brenden had two narrow sides, which made his case a bit more complicated. He had tracheomalacia (as well as other issues) and they were not sure if he would get better after 11.5 years of constriction. *Edited to add* Brenden also has a PFO that they did not feel comfortable fixing at the same time they operated on the DAA. He still has a noticeable heart murmur as well. A neurologist at PCMC told us last year that PFO's do not cause migraines, though everything I get my hands on says the opposite. We aren't sure what the next step will be as far as the PFO goes.

Brenden was in the PICU for a little over 24 hours until he was moved to the cardiac floor. He and I stayed there for 5 days.

He rested....

And he played....

But, mostly, he rested.

When Brenden was discharged, we set up a temporary bedroom for him right in our living room. He stayed there for a couple weeks. After the first week it was hard keeping him down. He grew stronger each day and went back to playing ice hockey after October 28th.

Despite the fact that he still has tracheomalacia, coughing fits when he's sick or running around, susceptible to getting colds/flu, incision site pain and occasionally has trouble swallowing, he says it's no where near as bad as how he felt before.

Thank You Jesus for sending us to Dr. U. Thank You for everyone who prayed for our son, for those who helped us in every way possible. You know who you are...Thank You!

And a special note to Brenden......


Happy 4 years post-surgery!!! I want you to know that I worried about you from day one. I knew something was wrong and it made mommy so angry when people didn't believe me. I felt like a failure not being able to help you when you were struggling to breathe and to eat. You were so brave and coped with the illnesses, coughing and breathing well . Your strength and courage helped mom, dad, gamma and everyone who loves you get through that time. You amaze me and I just wanted you to know how proud I am of you. You have become such an amazing young man and I pray that you'll continue to deepen your relationship with Christ and develop God-centered friendships as you traverse these next few years. I hope you know how much you (and all your siblings) mean to your dad and I. We are not perfect parents and even though we allow our frustrations and anger to get the best of us, nag you to clean your room (bathrooms, kitchen, mow the lawn, etc., etc.,) I hope you know that we LOVE you so very much.

All my love,



  1. WOW! What a story! And as a fellow "mom" I know exactly what you mean. Doctors are human and make mistakes, and worse yet they are way too quick to write scripts instead of trying to find the actual source of an ailment. Americans keep that ball rolling by demanding immediate relief when sometimes finding the real source of a problem and healing the body is not as simple as a pill or a surgery. Sometimes it takes a long time to heal something that has been wrong for a long time. I am so glad you persisted and got your cure!!! PRAISE THE LORD! God is good.
    Your friend from middle school,
    Barb (Dale) Allen

  2. OMG! Some doctors just don't listen. We had to go through something similar with one of our twins, Elijah, and now he has a feeding tube. I knew something was wrong, but I was told over and over just change the milk and he'll get better. Well, he didn't and finally we found a doctor who would listen. Now, he is BETTER!

    I am so happy you finally found the right doctor!

    Hugs and Mocha,

  3. Stesha,

    I love your blog! But you already know that. :) I'm so sorry about your son, Elijah, and what you had to deal with. It's a shame that doctor's don't listen more to parents. I'm curious as to what the condition is, but maybe if I scour your blog a bit more I'll figure it out. :)


  4. Lorri,

    I'm reading your post and crying, I can't help but feel a connection. You see, my mom did the same thing 34 years ago. I was born with a Vascular Ring, a right sided aortic arch. She knew there was something wrong and doctors wouldn't listen. The Lord must've been watching because He brought us together (when I was 3 years old) with a doctor who had seen some of these cases and it happened to be at Primary Children's Medical Center in SLC that many years ago. I am surprised and saddened that you and your son had to endure so many years of sickness and frustration. I can tell you that most doctors have never heard of a Vascular Ring, I have been explaining it my entire life...I was also treated for asthma. I would also like to meet others who have this diagnosis so I've started a google group called "Vascular Ring Personal stories". Please join and share Brenden's story (if he'll let you). Also, please give Brenden a big hug from another mom who really does understand.

    Thanks for your story,


  5. Cool story - our 14 year old son had vascular ring surgery Monday at LeBonheur Children's Medical Center in Memphis, and he's taking a nap in his own bed this afternoon for the first time this week! One night in ICU, three nights in a regular room and we're home. BTW - he has Down syndrome, but that really isn't a factor in vascular rings unless there are other heart issues present.

  6. Thank you so much for posting this. I'm sitting here crying and feeling scared and relieved all in the same breath! My son has had "breathing" problems since he was 3 months maybe earlier that I never paid attention to. We have been passed around from Dr. to Dr. and everyone has some lame opinion on asthma or allergies or acid reflux but no medicine has ever made an improvement. I happened to have a co-worker babysit him one night so I could go to class and when I got back she said he sounded like her daughter did, who happens to have CF. She urged me to go to her Dr. at UNC and we're awaiting a bronchoscopy for tracheamalacia and/or a vascular ring. We had a suspicious chest xray already which has brought us to this point. I felt so horrible for being glad something was wrong on the xray but I just felt like finally I wasn't crazy and maybe someone would believe me! My son is 18 months old and I can't imagine going through this as long as you did! It's so hard to hear the noisy breathing day in and day out. So I just wanted to thank you once again for sharing your story! THANK YOU!!!!

  7. Hi, I have known of my sons R aortic arch all of his life. He turned 10 on 10-10-10 (so cool). He just had an MRI in June and it confirmed a vascular ring. Our next appt. is in Dec and we can discuss surgery. We are waiting to see if they will close his VSD also. I just relized he is now having symptoms. Headaches and the feeling of throwing up after running a lot. Any tips would be great. Thanks

  8. Thank you so much for sharing you story my son has just be dianosged at 6 months with this we have practiclly lived at the Peds wing in the hospital since he was 7days old and even at this young of an age also were given a list of dianosis before finding the vascular ring. We head in for surgery tomorrow and hope this will be the begining of his healing process.

  9. Dear Anonymous (7/27/11), I am praying for your baby boy and his surgery tomorrow. I am so glad that they were able to find out what is wrong with him and even more grateful that you didn't have to wait years for an answer. Please let me know how he does!! Do you have a blog? If so, share it!! :)

  10. I sent you an email awhile back and was just wondering how your son is doing? Did he have the surgery?

  11. Hi reading your story makes me cry because I had the same situation with my now 3 month old baby girl. When she was born she had the wheezing and i told the doctors something was wrong shes not breathing right and she was vomiting out of her nose and mouth. They did crags found nothing and sent us home when she was 2 days old. After a week of this we noticed she couldn't breath so we took her to the er where we waited 4 hours and again they said nothing was wrong that it was normal. When I took her to her 2 week check up with her pediatrician she noticed the breathing right away. She recommended a specialist he did. Broncoscopy and a cf and found she had a double aortic arch as well. In addition she has trachiamelasia and stridder and vsd. They did her surgery and a complication occured which caused her limpnoids to leak a milky fluid so 2 weeks after being home from surgery we noticed she was breathing very heavy we rushed her back to the er at a different hospital where she was air lifted to Levine's children hospital and put in icu. The fluid had built back on her lungs and almost killed her. So she spent 1 month in the hospital. But I was very upset with the hospital for dissmissing my claims when I knew something was wrong. She wasn't able to eat or gain weight or breath properly and she was 4lbs 13ounces when she was born. She is a twin but I lost the other early in my pregnancy.

    1. Miss S - Thank you for sharing your story with me. I'm so sorry your baby girl had to go through all of that. How is she doing now? What a tough start for all of our babies!!!

  12. my name is nikki polidori. I just published a book about my son's vascular ring issue. Even though our stories aren't exactly right, they are pretty darn close. Strugle with diagnosis, wrong diagnosis, albuterol not working for PFTs, test after test, illness after illness....I really feel your pain and struggling. If you want a quick read to walk down memory lane, look up Lamby: A Mother's Journey Through a Twisted Medical System to Save Her Son. (Amazon)Hope all is well now. We still have small hiccups but so small compared I will not complain.