Our little heart warrior
Written by Kassi on Jan. 15, 2025.
Today’s the day. In a mere hour we’re taking our two month old to get a CT scan of her heart.
For those who might be new here, Daphne has been diagnosed with various congenital heart defects (CHDs).
And maybe by sharing our journey, it can help even just one other family feel less alone.
At our 18 week anatomy scan, we were told that Daphne had a heart defect and we would need more examination to find out to what extent her heart hadn’t developed. It was like a punch in the gut – suddenly our “young and healthy pregnancy” turned into a high-risk pregnancy with a lot of unknowns. We walked into our anatomy scan excited to see our baby and see how she’s grown, and we left with what felt like the weight of the world on us, referrals to the children’s hospital heart center for a fetal echo and MFM for genetics, told not to travel out of state and that we’d now have weekly appointments for monitoring.
A week later we had our first fetal echo.
The room was dim as the sonographer quietly took imaging of all angles of Daphne’s heart. I laid there for nearly two hours, watching our daughter’s heart on the screen before us. Modern medicine and technology never ceases to amaze me, and I remember thinking just how incredible it was that they could get such detailed imaging of this tomato-sized being inside of me.
Our next fetal echo was at 22 weeks and then at 33 weeks.
Each echo felt like we were being hit while we were already down. We’d go for each appointment and be told good news that something appears to have resolved, just to be told they found yet another thing to monitor. We were on the rollercoaster of being told Daphne would need heart surgery at birth to actually just being evaluated, to likely needing a NICU stay to not needing surgery until she was a toddler, to now being faced with surgery in a matter of weeks.
Daphne has been diagnosed with a very small ventricular septal defect (VSD) – a hole in the wall that separates her two lower heart chambers; a large atrial septal defect (ASD) – a hole in the wall that separates her two upper chambers; and a patent ductus arteriosus (PDA) – a persistent opening between the two major blood vessels leading from the heart, which typically closes after birth but did not in her case. And because of the presence of the PDA, they have not been able to rule out coarctation of the aorta (COA), which is the narrowing of the aorta. Each of these defects plays a part in how her heart is functioning, and they need addressed sooner than we thought.
At just one day old she had her first echo, where they found the ASD, but gave us hope that we might not be looking at heart surgery until she was 3 or 4 years old. But on New Year’s Eve we went for her follow-up, where things changed very quickly. Her cardiologist said he would be taking her case to their next meeting between the other cardiologists and surgeons on the team to determine next steps, likely leading to surgery sooner than later. The consensus was to gather more imaging and then schedule her for surgery.
Today we go for a CT scan for more imaging. From there, her care team will decide the level of surgery needed and when to get her on the schedule.
It’s so hard to not feel guilty and at fault for her CHDs, even though my brain knows it wasn’t anything I did. It’s so hard coming to terms with this being our reality, and desperately wishing these weren’t the cards she was dealt. It’s so hard having a medically fragile child, fearing for her health around the clock – especially during a time of year with so many illnesses going around and being told to strictly “watch her like a hawk” and ensure she doesn’t get sick.
I’m deeply grateful for her care team and the level of intentionality of care she has received. We’ve had nothing but the most positive experience with Children’s and their support throughout this journey.
As we continue on our CHD journey, any prayers, energies and space for Daphne (and Connor and I) are incredibly appreciated. Being first-time parents is hard enough, and having a medically fragile kiddo is even harder.
I find so much gratitude and joy in the day-to-day as we see her continue to grow and become the human she’s meant to be, and I’m thankful that she can be treated and go on to live a relatively “normal” life (even tho living with CHDs will always be our new normal).
There are days when I don’t feel cut out for this, and yet I’m reminded by so many dear friends in my support circle that I’m exactly the mama she needs.
She has a mom and dad who care so incredibly deeply for her and who just want the best for her. And we will do anything for our little ducky 🪿🤍
