In recognition of American Heart Month, members from the Speak Now for Kids community will be sharing their personal experiences of being a parent of a child with a congenital heart defect (CHD).
Today we’ll hear from Emma’s mom, Sara. At the time she was born, Emma’s family was living in Oklahoma and decided to temporarily move to Dallas in order to be closer to the pediatric cardiology team at the Children's Health.
We heard the words no parent ever wants to hear: “There is something wrong with your baby….we are seeing a serious heart defect.”
This is the devastating news we received about our baby girl at the anatomical ultrasound almost seven years ago, and our lives would never be the same. We would enter into an unknown world that would take us places, stretch our knowledge, challenge our faith and turn us into the family we are today.
At the time of diagnosis, we were living in Oklahoma, and there wasn’t a pediatric cardiac surgery program nearby able to deal with the complexity of our daughter’s congenital heart defect. So we researched top pediatric cardiology programs and, with the recommendation of the local pediatric cardiologist, we started being seen by the team at Children’s Medical Center in Dallas. The initial diagnosis was confirmed — Emma had a severe congenital heart defect called Hypoplastic Left Heart Syndrome with an Intact Atrial Septum.
We continued being monitored closely by our Maternal Fetal Medicine team in Oklahoma and the cardiology team in Dallas. With the help of our doctors, we decided to temporarily move to Dallas a month before her scheduled delivery. Due to the complexity of her heart defect, it was vital that she be near the hospital. Emma was delivered via C-section and was immediately taken to the cath lab for a procedure to open her intact atrial septum. She remained in the hospital for six months and we made the decision to permanently move to Dallas to be close to her medical team.
The last six years have been a roller coaster ride to say the least. Due to the complexity of her heart condition and rare genetic disorder, we have also traveled to Boston Children’s hospital for care. Today, Emma is in heart failure and is constantly monitored to give her the best quality of life. Emma’s life is filled with medical uncertainties, but we have learned to live in our new normal of countless medications, oxygen, feeding tubes, PICC lines, therapies and doctor appointments. She is a true blessing in our lives and we have learned to treasure each day.
If I could give any advice to families beginning their journey with CHD or any complex medical condition, here are a few things I would say:
- Do your research. Know that all hospitals are not equipped to handle complex congenital heart defects.
- Be an advocate. Know that your child needs you to advocate for their needs. Ask any question you may have and educate yourself with reliable information.
- Take care of yourself. The hospital can be a stressful place where you tend to put yourself last. You need to sleep and eat so you can be in the best place physically and mentally to advocate for your child.
Lastly, take this journey one day at a time. It is easy to become overwhelmed and get caught up in the “what ifs”. Try to be present in the moment and find a way to love your little one fully despite the stresses.
You can learn more about CHD here.