At 20 weeks in utero, my baby was diagnosed with an Interrupted Aortic Arch, VSD and Aortic Stenosis. Bryana Kennedy Walker was born September 25, 2016 at Advocate Christ Hospital under the care of Dr. Michel Ilbalwi, Bryana underwent her first open heart surgery at 10 days old on October 5, 2016 to repair her Interrupted Aortic Arch and Aortic Stenosis. Bryana came home on continuous oxygen, an NG tube for nutrition and over 12 meds to be given daily with daily weights. In Nov 2016, Bryana suffered a stroke, rendering Right Sided Weakness to upper and lower extremities. At almost 6 months of age after a cardiac catheterization, Bryana needed her second open heart surgery on March 9, 2017 to repair her VSD and insert larger shunt. Post-op, Bryana left lung collapsed, requiring Echmo for 13 days. A chest ultrasound revealed a Chylothorax, requiring a chest tube to her left chest wall to relieve fluids. Continue reading
This week, our State Chapter Coordinator, Melanie Toth, shares her experience with us as a new mom finding out her son would be born with a congenital heart defect and how PCHA helps to make sure other families don’t have to go through what Melanie’s did alone.
Like many heart families, when diagnosed with their child’s heart defect, your world is flipped upside down. It was no different for our family. I remember us walking out of the room not really understanding or knowing what just happened. We had only walked into the doctors office for our 20 week ultrasound, and left finding out our child would be born with a heart defect, that I couldn’t even pronounce. While I have always had a love and hate relationship with congenital heart disease, over the past decade I have learned a lot. I can’t change the diagnosis we were given that day, but I did wish I could change the information that our family was given when we left the doctors office.
We weren’t aware that CHD was the #1 birth defect or that too many families walked in similar shoes as us. We left feeling hopeless and alone, with a paper that said, “Tetralogy of Fallot”. My husband and I went online to get more information on our son’s diagnosis and, to say the least, were completely overwhelmed. There was different information on various websites, and we just felt more hopeless.
If 10 years ago our doctors would have handed us a PCHA Prenatal Conquering CHD Kit, life would have been just a little easier. From resource cards to navigate important CHD information, to guided questions on what to ask your medical team, and most importantly, how to connect with other heart families, the prenatal kit is like a life raft for new families. Through PCHA State Chapters and working with hospitals, prenatal kits have offered the much needed information and personal connection that every heart family deserves. If 10 years ago our family was given a prenatal kit, instead of walking out with our sons defect written down, our family would not have felt so alone in our heart journey, during a difficult first year with our son’s surgeries.
I feel honored and blessed to help our PCHA State Chapters as National State Chapter Coordinator. Personally helping heart families and helping set up chapters to empower families, is the best pay it forward our family can offer.
Melanie’s heart journey began in June 2008, during a routine 20 week ultrasound. She and husband were devastated by the news that their unborn son Luke would be born with a congenital heart defect (Tetralogy of Fallot) and required heart surgery at a week old and again at 9 months old. Feeling very scared and alone during the roller coaster ride of a CHD journey, Melanie decided that no other heart family should feel alone. In 2010, she has started a support group for heart families in Chicago. Working nationally and locally with various CHD organizations. In 2016, she began volunteering with PCHA’s new state chapters, to offer families more than just support. She is currently the State Chapter Coordinator for PCHA National helping to develop state chapters.