Arrival at OHSU and the NICU
Arriving at OHSU we parked at the ambulance parking near the emergency room entrance and took an elevator to the NICU. As the PANDA team, our daughter, and myself entered the NICU we were met by a NICU doctor.
The NICU at OHSU was set up into pods which were areas where 2-3 babies were located and being taken care of by the staff. The pod of the NICU our daughter was taken to was in the back corner. As we passed the other pods most were full of premature babies and neonatal infants who required a higher level of care.
About five minutes after our arrival the pediatric cardiologist introduced themself. Both the NICU doctor and pediatric cardiologist were great at explaining what the plan was to try to find out what was wrong. It didn’t take much longer and they were staring and heart echocardiogram or ultrasound of her heart looking at the structures of her heart.
Diagnosis of Our Daughters Medical Conditions
After about 45 minutes of the heart echo, the medical team was able to determine a diagnosis. I was taken into a consultation room to speak the what pediatric cardiologist. Our daughter had been diagnosed with Supra-cardiac Obstructed Total Anomalous Pulmonary Veinous Return. It is quite the mouthful to say and even more overwhelming when learning your child has been diagnosed with it.
Total Anomalous Pulmonary Veinous Return or TAPVR is a condition in which the pulmonary veins are not connected to the heart as they normally would be in the left atrium or the upper left part of the heart. The pulmonary veins bring blood with oxygen from the lungs to the heart and then it gets pumped to the rest of the body. With TAPVR the pulmonary veins are connected to a confluence or separate structure that sits next to the heart. From that structure, a single vein was partially obstructed, connected to the superior vena cava. The superior vena cava is the main vein above the heart that brings blood lacking oxygen from the body back to the heart. In our daughter’s case blood coming back from the body was entering the right side of her heart as it should but it was mixed with blood containing oxygen. They also discovered in her case that she had a hole between the upper chambers of her heart called an Atrial Septal Defect that allowed some of the blood with oxygen to pass to the left side of her heart and out to her body.
Oxygen in the blood is measured with a pulse oximetry machine and newborns usually have levels above 95%. Our daughter’s level was in the 50-60 % range at birth and was higher after being incubated and put on oxygen. It was due to the atrial septal defect being present that she had a fighting chance at life.
Comprehending the Diagnosis and the Difficult Choices Ahead
Having just completed three terms of anatomy and physiology I had an understating of what the pediatric cardiologist was describing. In describing the condition he also drew a photo to illustrate what the defect looks like and how critical she was.
I remember listening to the doctor and understanding what he was saying but at the same time feeling like it was all a horrible nightmare. You hear of kids being born with birth defects but we would have never thought it would happen to our family. The pregnancy was relatively normal and no anomalies were discovered during the ultrasounds or checkups.
Unfortunately during this time, my wife was still at our local hospital waiting to be transferred to the adult hospital that was connected to the children’s hospital. She knew there was a problem but was unaware of the severity at that time.
The next words from the doctor hit me like I had been run over by a semi. He said our daughter would require open-heart surgery that day to try and repair the defect or she would not live very long. On the same day we were blessed with our daughter and the miracle of life, we might lose her.
Over the next several hours more testing was completed and a consultation with the pediatric cardiothoracic surgeon took place. The surgeon gave basically the same info as the first doctor and then described the procedure to fix the heart. He would open up her chest and delicately cut the confluence and her heart and sew them together to make her heart whole again. Keep in mind while describing this he is also describing the size of her heart as the size of a walnut. While talking with the surgeon I asked every conceivable question I could think of at that moment. So many thoughts and questions were racing through my mind. Some I would get answers to that day, others would take much longer and some have never been answered.
The last part of the conversation with the surgeon was going over consent for surgery. He went over complications that can occur which included blood loss, damage to the cardiac tissue, paralysis, and death. Not consenting was a death sentence as she would only be able to survive for hours today. The choice was clear, she was going to have surgery that night.
Although having to face the decision between certain death and the possibility of death was clear it didn’t take away from the fact that I felt like I was responsible for the outcome of her surgery. If it didn’t go well it was on me for deciding to put her through that. Not consenting to the surgery wasn’t even an option in my Ming though.
Late Afternoon and Surgery Preop
By the time I signed the consent for surgery, it was late afternoon and the plan was to have her in surgery as soon as possible. Her tiny, fragile body was in a life-or-death fight for survival. The quicker they could start the surgery it would take some of the stress and struggle off her body.
During the time of the consultations and diagnosis, my parents showed up at the hospital to be with me. They were both able to go back for a brief moment to see their grandchild while she was having her heart echo done. My wife was still at the local hospital back home and they were trying to get her transferred to Portland. My wife and I were communicating through phone calls and text throughout the process the best we so she would be updated on what the plan was.
Once the decision was made for surgery and consent signed they started the pre-op procedures getting her ready. She already had one IV and was being sedated. Another IV was started and more consultations were completed with the anesthesiologist. It was around 6:30 or so that we started the trip from the NICU which was in the main hospital to the surgical department of the children’s hospital.
The last time I saw my daughter was at 6:50 pm in the hallway outside the surgical department. She was so small and innocent at only nine hours old. Her precious little body had been fighting all day to keep her alive. Looking at her more thoughts raced through my mind. Would she survive the surgery, would the defect be worse than they thought, would I ever get to see her again. Then my mind went to my wife. Unbeknownst to me, she was arriving at the hospital in Portland about the same time our daughter was going into surgery. She hadn’t been able to see her since right before the PANDA team left with her. Would my wife be able to see our daughter again?
Having to say leave her when she went into surgery was one of the hardest things I have ever had to do. I broke down again at that point. It was one of many times throughout the day that I wasn’t able to control it.
Surgery and Getting to See My Wife Again
After she was in surgery I was able to contact my wife and found out she was in a room in the labor and delivery department of the main hospital where I was. Getting to see her again was a relief as I hadn’t seen her since about noon.
We spent the time of our daughter’s surgery in my wife’s room. More family showed up, brought us food, and stayed with us for many hours. It was a blessing to have others there with us, to comfort us, and to talk with. Having them there also allowed us to take our mind off of the fact that our daughter who at that point was about nine hours old and having open-heart surgery.