Philadelphia Congenital Heart Walk

Brayden's Bunch

On March 24th, 2016 Brayden had his first visit to the pediatrician. The doctor mentioned hearing a slight heart murmur, but that it was not too abnormal for newborns (It would likely go away within the first few weeks of life). On March 25th, Brayden was having a hard time breathing. Brayden went back to his pediatrician where he saw a different doctor than the day prior. We were told what we were seeing was known as periodic breathing and fairly normal. I asked if she had heard the heart murmur that the previous doctor had. She listened again and told us that if he seems worse over the weekend to get him scheduled for an echocardiogram (an ultrasound of the heart). Brayden was only 6 days old and it was Easter weekend. This crazy, first time mama was not having it! We asked her to see if she could get an echo done anywhere that day and she did!

Twenty minutes later we arrived at CHOP at Virtua where we were greated by a fabulous nurse. She took Brayden's vitals and immediately stated "please do not feed your baby! He is breathing way too quickly and is at risk for aspiration." I started panicking - if I took my baby home, he could have died? After what felt like a million hours, we finally had some answers - Brayden was diagnosed with a large Ventricular Septal Defect (VSD - a hole in the wall that separates the lower chambers of the heart) and a Patent Foramen Ovale (PFO - a flap-like opening between the upper chambers of the heart that does not close after birth).

A newborn's heart is the size of a walnut at birth. A small VSD usually measures 3mm or less in diameter. A medium VSD usually measures from 3-6mm in diameter. Large VSDs are greater than 6mm in diameter and typically require intervention.

In June of 2016 Brayden's mom was contacted by CHOP's scheduling department to have Brayden placed on the surgical schedule. He was scheduled to have open heart surgery on August 22nd, 2016. Luckily, on August 10th, 2016, during a pre-op appointment, they were told Brayden had a huge growth spurt which allowed them to cancel the surgery for the time being.  Brayden will likely always be a "wait and see" type case.  His last follow up was on September 12th, 2019 and despite the left side of his heart being enlarged, he was cleared for 2 years!!!

After participating in our first heart event at the Phillies game in June of 2016 and our first Congenital Heart Walk in June of 2017, we pledged to make the heart walk an annual tradition. Our hope every year is to give back to an organization that's research benefited our family and additionally to celebrate Brayden and all of his accomplishments this far.

Please join us at the Philadelphia Zoo on Sunday, August 2nd, 2020 to show your support! All participants will be provided with a "Brayden's Bunch" T-Shirt the morning of the walk as a thank you for taking time out of your busy schedule to join us! **Please note: we have been informed that all individuals over the age of 2 are responsible to donate/raise $20.00 to cover their entry into the zoo.**

If you are unable to participate in the walk, we ask that you consider making a tax-deductible donation to our team also using the provided link. All contributions are greatly appreciated and no amount is too small!

Thank you in advance for your support and generosity.

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