Our Ebenezer

Some of you were asking me recently, what type of heart defect Natalia had when she was born. I was looking back through my blog posts and realized I had never really explained it. I also thought I'd include "our story" in this post as a way of recording it for the future.


Here is a simple explanation from the American Heart Association website for D-Transposition of the Great Arteries/Vessels. (If you are interested in learning about other congenital heart defects, their website is very helpful in putting things in layman's terms.)
*Italics are mine.


TGV--What is it?


A heart in which the two main arteries carrying blood away from the heart are reversed. (Instead of crossing, they run parallel.)


A normal blood pattern carries blood in a cycle: body-heart-lungs-heart-body.


When a d-transposition occurs, the blood pathway is impaired because the two arteries are connecting to the wrong chambers in the heart.


This means that the blood flow cycle is stuck in either:
body–heart –body (without being routed to the lungs for oxygen) or
lungs–heart–lungs (without delivering oxygen to the body)
This results in blue baby symptoms, and is rapidly fatal unless intervention occurs.

Without surgery, the only way to survive this condition temporarily is to have leakages that allow some oxygen-rich blood to cross into the oxygen-poor blood for delivery to the body. A hospital facility can also catheterize a patient until corrective surgery can be performed.


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Our story:
I was just thinking the other morning about the day I gave birth to Natalia.


I had had a normal pregnancy (4 months of 24-hour nausea, but normal). I had no health issues, no heart disease in our immediate family history, and normal ultrasound results. Natalia's condition was completely unexpected.


I remember the joy of hearing "it's a girl!", having her placed on my belly and Pete cutting the cord. Through the blur of tears I told him, "You were right! We have a girl!"


My doctor, who had been such a calm presence during the delivery, simply said to the nurses standing by to "have a closer look" at her, that he was concerned about her color. Pete was more aware of what was going on than I, and noticed that very quickly more nurses showed up and things appeared urgent. The doctor then told us that they were going to take Natalia down the hall and he'd return in a few minutes to let us know how she was doing.


We were in shock. We honestly were protected by it. Had we known the full scope of what was happening, oh my...


When the doctor returned he gently told us of her heart defect. (The man had incredible bedside manner!) He said they were doing all they could to stabilize her and he'd let us know more when he could.


As Pete began making calls to our family, church and close friends, reality began to sink in just a bit. We knew very little, yet even what we knew seemed so daunting. But from the very first moments, God's unexplainable, unsurpassable peace flooded our hearts. We sensed acutely the many prayers being uttered on our behalf. (Even on this day, as I write these words, my eyes well up with thankfulness. Thankfulness for the believers that surrounded us. People we didn't even know.)


We would get to touch her hand through the hole in the side of her transport cart before they took her to the University of Maryland Medical Center, which was an hour south of where we lived. It would be 4 days later, on my 29th birthday, that I would get to hold her for the first time. The best birthday gift I've ever received!


Natalia would spend the first 5 days in the Neonatal Intensive Care Unit. Weighing 8 lbs., 8 1/2 oz., she was obviously a cardio baby at first glance to anyone who walked in those doors. Those extra pounds and being full-term certainly helped in the days ahead. Would you believe that even after her 10-hour surgery on day 6, she never dropped below 7 lbs.?!


At birth, the size of a human heart is about the dimensions of an unshelled walnut. They would switch her two main arteries to the currect position. The whole thing is just so hard for me to fathom!


The day of her surgery was agony. My parents had come down to be with us and we found a waiting "room" that was really a courtyard with lots of plants and running water. A very peaceful setting with cushioned benches. We were in such a blur though, my memory is fuzzy. I do remember being unable to make even the smallest decision, like what I wanted for lunch. My uterus was shrinking and I was doubled over for awhile. I also was pumping regularly so Natalia could continue having my milk with the extra calorie formula they were adding. I'm glad we weren't alone, and that Pete wasn't carrying everything on his shoulders.



We saw her briefly post-surgery. I remember someone warning me about all the wires, tubes, and equipment, but I'll never forget her palor. I had never seen anyone so incredibly white like that before. That rattled me more than anything else that day.


Once she gained her strength enough to feed regularly, she came home at 3 weeks of age on Tuesday, January 17th. I'm not medically knowledgeable, but a mere 2 weeks for an infant to recover from open heart surgery seems pretty miraculous to me.

Looking back, we can see God's fingerprints all over this story. For one thing, the doctor who delivered her had not seen this particular heart defect in 16 years of practice. Two weeks prior to Natalia's birth, he delivered a little boy with the exact same thing!


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Today, 5 years later, as I was traveling the highway on the way to the grocery store, I passed a medical transport truck for the Penn State Children's Hospital. (That's who we see for her yearly checkups now.) I smiled and thought, maybe they're helping a cardiac patient today. :o)


We are so aware of God's kindness and mercy when we look at our daughter.


We certainly went through the emotions that accompanies trauma, but God protected us from fear. How? I have no idea other than by the power of prayer. God's peace overwhelmed us.


Today, when I look at Natalia's scar, I am reminded of God's faithfulness to us in that dark valley. It has lengthened to about 6" as she's grown, but it has faded in color.



I am thankful for it. And, I hope Natalia learns to think of it as her "Ebenezer", as Samuel called the stone he placed at the spot of Israel's re-dedication.

A reminder of God's mercy and restoration.