Stephanie Villagran - Five Tips for Moms Coping with a New CHD Diagnosis
Stephanie Villagran is from New Orleans, Louisiana. She is a CHD Mom and American Heart Association New Orleans Heart Walk Top Walker. She is mom to Mason and Malaya. Stephanie shares Mason’s legacy through Mason’s Angels, #RIHMASONSANGELS. Follow Mason’s story on Facebook and Instagram at @MasonsAngels.
Mason Cruz Villagran was born a twin to his sister, Malaya Villagran, on November 23, 2013. He was born with ASD/VSD and AV valve deficiency and lung disease. He had three heart procedures along with over 20 blood transfusions within his first 10 months of his life, when he lived in the NICU for just shy of 6 months. Mason had several other procedures for other health issues that are common with heart pediatric babies.
But despite what Mason’s medical charts said about his health, he was a happy baby and the shining light of our family. He was full of life and character. Like any child, he loved Mickey Mouse. He would clap, dance and play ball.
I had found out that Mason had CHD when I was pregnant. Like any mom would be, I was shocked at just how serious the diagnosis. I looked to the stories of other CHD moms for strength which why it is so important for me to keep Mason’s story alive. Although there were many struggles, Mason was here for a very special reason. He is an inspiration to so many and really helped me with my own perspective
The American Heart Association has been a family to us and we want to help strive for ways to help families like ours. The American Heart Association does so much to educate, help and recognize CHD stories in the community. We need to help the community better understand pediatric CHD. We work alongside the American Heart Association to help fund research so that future CHD families can benefit from CHD research. The American Heart Association is making sure even the little heart hero is heard.
On April 22, 2016, our little heart warrior, Mason, gained his wings at just two years old. I am proud to say my son was CHD hero and that his story continues to inspire others.
What I want to share with moms, who are just like me, learning of a CHD diagnosis and trying to figure out how to cope is this:
- Say yes to a hospital social worker or nurse manager. It is sometimes a difficult to understand what the physician is telling you especially when a mother’s emotions come into play. Bring someone on board to help you manage the process and be a resource.
- Seek advice on support networks, just like this, or hospital-based groups. While we all want to be strong for our families, we all need a place where we are not felt to be alone. It is okay for us to deal with our emotions.
- Be strong, open-minded and prepared to know that this is a long road for the rest of their lives. While it may be made to seem that it will be done with after surgery there are many aspects of recovery, therapy and follow-ups down the road.
- Be an inspiration for other moms and share your story to help them through their emotions, challenges and so they know they are not alone.
- Let your child be the hero so they know its ok to be a child with CHD.
What advice do you have for a family dealing with CHD? Join the Support Network to comment below and share your experience.
