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!

*Adnoidectomy

*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.

*Bronchitis

*Chronic Bronchitis

*Sinusitis

*Chronic Sinusitis

*Asthma

*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......

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,

Mom