Alaric: A Warrior with A Gentle Heart

Hi, my name is Bri and I am Alaric's mom.

Alaric's dad, Ben, and I found out we were expecting in December 2019. After a miscarriage in 2017 we were thrilled to see those two pink lines. As we watched my belly and our baby grow we continued to get more and more excited to welcome him with open arms into this world and our family. We were told over the course of my pregnancy that everything looked fine and at every visit were told his heart rate was exactly where it should be. The doctors had no reason to be concerned until I was induced on September 19th, 2021; a full week after my due date. As my labor progressed Alaric's heart rate became unstable and kept dropping. We were told this could be normal as the placenta was weaker at 41 weeks gestation. The doctors were slightly more concerned when I stopped progressing in labor and broke my water only to find meconium in my amniotic fluid. Forty-eight hours after my induction had started we made the decision to proceed with a c-section due to concerns for Alaric and my own health.

Alaric was born on September 21, 2021 at 7:09pm weighing 7lbs 2oz and was 19in long. At 41 weeks gestation this is considered underweight. Alaric only spent a few short hours with us in the room before being moved to the NICU due to concerns about his dropping temperature and poor oxygen levels. Alaric was placed on an infant CPAP to try an improve those levels while they waited for x-ray results. Those x-rays showed he had fluid in his lungs inconsistent with what is typically seen in babies who have meconium in the amniotic fluid. The doctors keep him on only IV fluid and were only allowing him to eat via syringe and only in very small amounts at a time. They originally thought it was infantile pneumonia or pulmonary hypertension and treated accordingly. However, after 24 hours with no improvement they decided it was best to look for a second opinion.

After being flown to another hospital nearby Alaric received more lung x-rays which showed improvement in the fluid levels but his heart rate and oxygen levels were still too low for the doctors. At this point they decided to do an echocardiogram of his heart. My husband and I received the phone call that would once again change our lives when our son was only three days old.

We were told they had identified what he had; that it was a congenital heart defect called Total Anomalous Pulmonary Venus Return (TAPVR) as well as an Atrial Septal Defect (ASD). TAPVR is a heart defect in which the veins that should return blood to the left side of the heart to be oxygenated by the lungs created a by-pass that connected them to an artery near his liver. This meant that all of his blood was returning to the right side of his heart and was being pumped back out to his body and not being oxygenated like it should be. The only reason his blood was getting oxygen was because of his ASD, a hole between the wall of the two sides of the heart, which allowed a small of amount of blood to get to the lungs to get oxygen. However, these are both defects that would need surgical correction.

Less than 24 hours after his first transfer Alaric was flown to Duke University Hospital to await surgery. Alaric spent the next week in the PCICU and at only eight days old, on September 29, 2021, underwent open heart surgery to repair the TAPVR defect and ASD.

After his surgery Alaric spent another four days in the PCICU before being moved to the Pediatric Cardiac and Complex Care unit to continue his care. This included starting his journey of re-learning how to eat as Alaric had was only being fed via a NG tube since arriving at Duke and had only starting learning how to feed via bottle for a few days before having to stop for surgery. After spending four days on the PCCCU Alaric was allowed to come home but our journey did not end there.

While his heart defects are repaired we still have a long way to go in terms of recovery. This road continues to be filled with setting up and learning how to care for and NG tube at home, learning a medication routine, doctors appointments, occupational therapy appointments, physical therapy appointments, cardiology appointments, developmental appointments, and genetic appointments. For now Alaric is at the doctors office at least twice a week for weight checks or therapies and we still have more doctors that we are waiting for our first appointments with.

This came as a complete surprise to us and resulted in more excitement in our first month with Alaric than we could have ever expected. This also meant that in order to make sure he is getting the care he needs I had to stop working in order to care for him and take him to his appointments. We would greatly appreciate any help as we are continuing to learn how to balance our new normal and provide Alaric with the best care that we possibly can.