Have you ever been in a foreign country where someone speaks to you but you only pick up a small fraction of the words? That’s how I felt sitting in the cold room as a doctor approached with a stack of papers and sat down with heavy eyes.
Caught by Surprise
I didn’t expect the doctor to come in after my 20-week anatomy ultrasound and when he did, he said so many words that I did not understand. I did, though, understand two that I didn’t like to hear together- ‘heart’ and ‘defect.’ I’m not a medical professional, but I know that the heart is a vital organ for life and that a defect means something is wrong. These were not words I wanted to hear on the day I was naively just expecting to learn the gender of my growing baby.
For 30 years of my life, I personally knew of one person with a Congenital Heart Defect. Congenital Heart Defects happen in 1 out of 100 babies. This means that I (and you) have definitely crossed paths with more people with this hidden disease without knowing it. That’s the power and yet the downfall of a silent illness- from the outside, things look normal.
1 in 100 babies. That means 40,000 US births a year will have a congenital heart defect. Of those, 25% require reparative surgery. There is no cure for congenital heart defects, but there are lifelong maintenance and heart repair.
To the left is our girl, Sage. As I write this, Sage is three months old. She is beautiful. She is active. She is sweet. She is strong. She has a broken heart. Sage’s diagnosis is Tetralogy of Fallot.
We are currently seeing the Heart Center at Nationwide Children’s Hospital regularly and anticipate open heart surgery in the next six to eight weeks for her. (You can read here about my perspective on the waiting period.) Heart babies have varying degrees of severity and urgency. We are allowing her to get as big as possible without compromising her oxygen levels and function of her heart to perform the surgery.
I’ve been so thankful to be near Nationwide Children’s Hospital during this time. I always knew it was a great hospital, but when your baby is requiring such a huge procedure, you grow to really appreciate being nearby. Nationwide Children’s cardiologists travel across the state to provide care. They treat congenital heart disease patients from neonatal through adulthood, partnering also with local hospitals to offer fetal echo sonograms (this is the screening of the heart for unborn children.) We had this done for Sage and knowing additional information beforehand was so helpful to us.
The Nationwide Children’s Heart Center is comprehensive and not only consists of physicians and nurses, but also dietitians, social workers, respiratory therapists, exercise physiologists, researchers, and more. They are all trained in the care of patients with congenital heart disease. Each year, Nationwide Children’s Hospital performs 407 open heart surgeries, 691 cardiac catheterizations and EP procedures, 15,829 EKGs, 14,411 echo sonograms, 926 stress tests, and 16,957 clinic visits. Again, it’s amazing to be able to access a leading hospital and program. (Statistics from NCH Heart Center.)
The journey has now spanned just ten months for us. Ten months of a whirlwind as we’ve dug into research, connected with others who know this way of life, and frequented cardiology appointments. We tried our best to prepare our toddler for the changes and made room for our postpartum expectations to change.
Major events tend to be trans-formative and shaping times for people, and these ten months have been just that for me. It’s hard to understand experiences we don’t have ourselves, but the power in storytelling is the chance to connect a little more with the bigger picture that is the world around us.
Ways that Being a “Heart Mama” Has Changed Me
1. I’m that “germ freak” I used to roll my eyes at!
With my first I always had the “germs won’t hurt” mindset. I’m all about child play and exploration and was raised on the idea that dirt builds up the immune system. I never understood the moms who kept their child ‘sheltered’ from germs, until I had a baby whose life could be drastically threatened by something common to the rest of us. Immunocompromised children (and adults) have every right to carry around sanitizing wipes and stay cooped up during flu season. Now I get it. My daughter’s surgery is dependent upon her staying healthy enough to undergo her procedure, so it has become our top priority.
2. I have deepened my value of friendships.
Being a friend seems to get harder in a lot of ways when you become a mom. Becoming a medically complex mom has made this even more difficult. My energy, my priorities, and my time commitments have shifted. It’s a little harder to be my friend because I come with more baggage and less brain space. That makes me incredibly thankful for the people who have stuck by me and kept me going on hard days.
3. It has given me a heart of compassion for all mommas of medically complex kids.
Every time I walk the halls of Nationwide Children’s Hospital, I am humbled to be in the presence of so many strong mothers. Mothers who are advocating for the very best for the kids. Moms who are carrying heavy loads of emotions, schedule keeping, and all around juggling the needs of the family.
4. The diagnosis has challenged me to put aside comparisons, expectations, and milestones.
With my first child, I spent a lot of time googling “When should my child ____” so I was sure he was up with all of the milestones. This time, I realize those aren’t the things that matter most. I’m no longer stressing over milestones or freaking out when someone’s child is seen doing some incredible feat on social media. I’m more present. I’m here. I’m okay with our unique journey.
5. It has increased my appreciation for science and medicine.
I’ve erred on the side of “crunchy” a number of times in my life. I try alternatives to medicines for colds and viruses and we like our homeopathic concoctions, but I am SO SO SO thankful for modern medicine and the developments made. This progress is literally saving my child’s life.
6. I’ve realized it’s okay to not be able to fix someone’s problem, but to be intentionally present.
I’m a helper. If I can fix something, I want to. This journey has put me in a place where I can’t “fix” my child’s illness. There’s also not much others can do to “fix” things. However, there are a lot of ways to support heart families, and one is just being present.
7. It has forced me to understand my insurance and billing systems.
This one didn’t come without some screaming! I knew that medical complexities took time as far as appointments and addressing the physical side of things. I never anticipated how much time I would spend on the phone (or on hold) with billing, insurance, payment assistance, etc. It’s a full-time job in itself and I have the highest respect for everyone navigating these systems.
As we recognize CHD week, it’s a week of both statistics and stories. It’s a time we celebrate hope and recognize losses. This week we bring light to our 1 in 100 babies and ask you to be a part of the journey by learning, listening, and sharing with us. Next time you or a loved one goes in for an anatomy scan, make sure to ask questions to get a good look at the heart.
Do you know a heart family? Here are some great ways you can be an encouragement to them!
Want to learn more about organizations doing great things for heart research? The Pediatric Congenital Heart Association, Children’s Heart Foundation, and Mended Hearts are great places to learn and be a part of the conversation and mission.