February is American Heart Month, and unfortunately, our tiniest, most vulnerable citizens also struggle with heart challenges. To promote awareness and offer encouragement to parents in a similar situation, we’d like to share Shannon Murray’s story.
Shannon is a morning news anchor in her hometown, Dallas, where she lives with her husband. Shannon and Chris are expecting their first child, a baby girl named Stella, in March.
“We learned at our 20 week anatomy scan that our baby, Stella, has a rare heart defect called Tetralogy of Fallot with Pulmonary Atresia. Open heart surgery will be required to repair an opening in the lower chambers of her heart and to replace her pulmonary valve. She will likely have several procedures and surgeries throughout her lifetime. She will regularly see a cardiologist and learn how to manage her condition, but we are hopeful that she will be able to otherwise live a normal life,” Shannon said.
When Stella is born, she will immediately be transferred to a different hospital for a catheter procedure.
“There is a good chance that I will not be able to hold her or have bonding time in the delivery room. This is something I've had to mentally prepare myself for, but ultimately I realize it's a small sacrifice to make. Her health is the top priority.”
Shannon and Chris also know that Stella will not come home from the hospital immediately and will likely spend several weeks in the Cardiovascular ICU.
“We've taken that into account while packing her hospital bag and other NICU/CVICU moms have given us some great tips! Nurses told us not to bring any baby clothing with zippers or anything that is a family heirloom. We packed a couple Bonsies because the chest opening will allow for any chest lines and cords that she may need.
The nurses told us our scent and voice can also help soothe her when we can't be with her, so I recorded myself reading a book that Chris can play for her when I can't be there. We also have been sleeping with a small blanket and "lovies" that the hospital provided to put in her incubator.” (See what Shannon is packing in her hospital bag here.)
Since Shannon has shared her story, she’s connected with many other parents whose children also have a heart defect.
“The community support has been incredible since we publicly shared our story! I have received thousands of messages, comments, e-mails and even hand written letters from across the country. Many people offered their support and encouragement, while others shared their personal experience with TOF or heart defects in general. It has been so helpful to connect with other moms and to hear stories of their children who are now thriving and living full lives.”
Learning that your child has a congenital heart defect is a frightening experience, and there are so many questions and unknowns. Shannon uses her platform as a news anchor to provide medical expertise about heart defects, spread awareness, and share how she is preparing for her daughter’s birth. (Watch one of her segments here.)
“Pregnancy can be very isolating, especially when there are complications. If I can help one mom feel less alone, then it was worth sharing our story."
"We have shared the highlights of our pregnancy and I wanted to be transparent and tell the full story. I'd never heard of TOF before and hopefully this will help spread awareness and educate others on congenital heart defects.”
From learning about her daughter’s diagnosis to preparing for her birth, Shannon’s mindset is truly inspiring. We are so proud to share her story with our readers and have no doubt that Stella’s strength will mirror her mother’s.
“My advice to parents is to give yourself grace. When we learned of Stella's condition I was devastated. I no longer wanted to celebrate the pregnancy; I didn't even want to have a baby shower - and that's a normal reaction. I allowed myself to feel those feelings of sadness, anger and confusion. I met with a therapist to work through it. I also started researching TOF and connecting with other parents. We've had extensive meetings with our medical team and we toured the hospital and the CVICU. I now feel prepared and ready to face our first challenge as parents, but it took time to get there.
The anxiety and fear has not totally gone away, but my mindset has transitioned from ‘Why us? Why her?’ to ‘Of course us.’ We are meant to be Stella's parents and she is perfect to us. We are ready to advocate for her and we love her so much. We can handle this and we will.”