Every year, 100,000 babies don't make it to their first birthday because of CHD.
Jacob Alexander Burris | Heart Warrior of the Week

Name: Jacob Alexander Burris          

Heart defect(s): Disconnected Aorta (severe coarctation of the aorta)

Date of birth: October 11th, 2001

Diagnosis: Jacob’s CHD was found at his 12-year well-child checkup when his pediatrician detected he was suffering from high blood pressure. A few weeks later, he was officially diagnosed after seeing a pediatric cardiologist. Imaging showed that Jacob’s body had compensated for the blockage in the aorta by growing a handful of vessels that grew in above and below the disconnect, allowing just enough blood flow to keep him alive.

Described in a few words: Strong-willed, tough, spiritual, generous & kind-hearted.

Surgical history: Jacob had a procedure to attempt to stent the coarctation, that’s when his cardiology team found that his aorta was completely disconnected. He then had one open-heart surgery in September of 2015. His surgeons successfully grafted a Dacron piece in place of the disconnected portion of the aorta.

Time spent in hospital: Since his diagnosis at 12, Jacob has spent just a few weeks in the hospital. His surgery was successful, he recovered like a champ, and thankfully, he hasn’t had reason to be admitted since his surgery back in 2015.

Medications: He was prescribed hypertension medicine as soon as his doctors found he was suffering from high blood pressure. Our cardiology team explained that they had not seen many cases like Jacob’s so there was a 50% chance that his blood pressure could be relieved by the surgery, but also that his vessels had compensated for the high blood pressure and they could remain rigid. Jacob’s blood pressure was not relieved by the surgery so he takes hypertension medication, likely for the rest of his life.

Restrictions: No weight lifting or decathlons but otherwise he can do pretty much everything!

Future surgeries: There may be a need in the future to stent the aorta either above, below, or both if the vessel begins to restrict. Jacob makes sure to keep up on his annual visits to the heart doctor so he can get imaging that will show any changes from one year to the next. We make annual visits to the cardiologist & in fact, Jacob just graduated from high school and graduated from pediatric care to adult CHD care!

Worries you face being a Heart Family: Just the usual CHD challenges like making sure we take meds every day. Since Jacob was 12-yeard-old when he was diagnosed, we missed out on 12 years of practice! So we had to catch up as quickly as we could.

What inspires you about Jacob? That he overcame his surgery with an amazing attitude & that he has handled his diagnosis with such grace – it was like “Ok, what do we have to do now?”

Jacob was a recipient of a WISH from Make-A-Wish. And after that he became a WISH Ambassador and wants all CHD heart heroes to know that they likely qualify for a WISH! In 2015, Make-A-Wish, Oregon sent Jacob to Dallas, Texas to meet the legendary comic book creator, Stan Lee! Jacob is an avid heart health advocate; he has been to Washington DC to share his story with members of congress, he attends CHD conventions to learn all about the most recent developments in CHD treatments and he even had the opportunity to design a pair of heart-health-inspired Nike Air Max 95 shoes through the Doernbecher Freestyle Program. Sales from the proceeds went right back to OHSU Doernbecher Children’s Hospital to help kids just like him! 

Coarctation of the Aorta

Anatomy: Narrowing of the aorta, the large blood vessel that branches off the heart and delivers oxygen-rich blood to the body.

Complications: This can lead to narrowing of the aortic valve, high blood pressure, stroke, aortic aneurysm, rupture or tear, premature coronary artery disease, or brain aneurysm. If the case is severe, patients can enter heart failure or their heart might not be able to pump enough blood to the other organs. This can cause damage to the heart and also can result in kidney failure or other organ failure.

Symptoms: Most patients don’t have symptoms, but those that do have pale skin, irritability, heavy sweating, difficulty breathing, difficulty feeding, high blood pressure, headache, muscle weakness, leg cramps or cold feet, nosebleeds, and chest pain.

Treatment: Treatment options include surgery and balloon catheterizations depending on the severity of the condition.

Prevalence: This CHD accounts for about 4-6% of all congenital heart defects, occurring approximately 4 out of every 10,000 live births worldwide. It affects males more than females (59% of cases are in males while 41% are in females).

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