Designed for babies ages 0-6 months that are not teething

Heart Warrior Stories Kayla H.

This is our little heart warrior.

Before I formed you in the womb I knew you. Before you were born I set you apart. Jeremiah 1:5

12/02/2021 was our 20-week ultrasound! We were so excited to see our little baby boy! After they finished the ultrasound they suspected something with our son’s heart. They explained that they couldn’t get all of the photos they needed so they referred us to a fetal specialist. This was extremely scary to hear that we needed to see a specialist.

On 12/11/2021 we had our first fetal specialist appointment. We were told that our son was perfect and we got a ton of adorable ultrasound photos of our baby. He even flexed for us! So we only needed one more fetal specialist appointment to make sure his growth was good! We were so relieved.

On 01/22/2021 we had our second fetal specialist appointment a month later. We ended up having a different ultrasound technician and nurse. After his ultrasound, she turned to us and says I’m calling the doctor to come to speak to you. I broke down because she was only looking at his heart the entire time – no cute photos this time. We didn’t even see the baby’s face. Chris came up to me to hold me until the nurse came back. We were taken back into the nurse’s room. They had to call the doctor (he doesn’t come to my Ob’s office) and he tells us that baby needs to be seen by a fetal cardiac specialist because his pulmonary veins are misconfigured but seem to drain into the left atrium. The doctor seemed to think that this would just require a yearly follow-up on his heart.

On 01/28/2021 we went to CHOA to get a fetal echo on his heart. Chris comes with me to the appointment but we are told he has to stay in the waiting room while the echo is performed. I can’t imagine how he felt because I was freaking out. The staff at CHOA is completely amazing. During the echo, the fire alarm goes off so while she’s looking at our child’s heart she has the flashing lights and annoying noise. I told her that I needed to close my eyes but assured her that I was not falling asleep. The echo took about one hour until it was complete. The echocardiographer then leaves my room and says I’m going to talk to the doctor about our findings and make sure no extra photos are required. The nurse then comes and gets me and my husband and takes us to a counseling room. You know something is wrong when you have three doctors/staff walk into the room to talk to you. They say something is wrong with your baby’s heart. It was honestly a blur but they told us he has a type of CHD called supracardiac TAPVR (Total Anomalous Pulmonary Venous Return) and will require open-heart surgery after birth. Our team assured us that this was a good thing that they caught it before birth because it rarely happens. I will be delivering our son in Atlanta via C-section. He will be closely monitored in NICU until his surgery which could be immediately or up to three weeks after birth. He will be transferred to CHOA for surgery and will be there two weeks or more after his surgery.

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