Jack's diagnosis

This post originally dated 04/17/2010.

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I'm now 21 weeks pregnant, and we found out last Monday we're having a boy. We had a jolly good time at the ultrasound, counting who won and lost bets on baby gender, and me trying to suppress Allan's intense need to come up with world's most ridiculous boy names. All was fun until the tech, at the very end, mentioned that in her report to Dr. B (my OBGYN) she will need to mention what she termed a 'cardio abnormality'. Somewhat slowed in our tracks, we inquired further. She said on a couple of views she saw the heart outflows transposed, but in the same sentence reassured us that 'it can be corrected surgically'.

Sense of rapid emotional downfall ensued. For once, we had no idea what was the actual problem except to be scared stiff by the mention of anything containing words 'heart' and 'surgery' in the same sentence. The tech took us back to the waiting room to sit out for Dr. B. I hoped to hear that this kind of early concerns are frequent, often false, and we can keep moving.

Dr. B sounded cautious. We would need to have another US done, at a specialist high-risk pregnancy group, to confirm the initial suspicion. To my question about how often these are ruled out, she said that most of the time they're ruled in, and detailed diagnosis is offered. She did try to encourage us with news that this appears to be the optimal time in Memphis to work with highly qualified medical staff like pediatric cardiologists, but I'm not at all sure that encouragement is what we got away with...

The earliest we could get the second test was Thursday. Normal tendency to spend three mentally vacant days would be to Google the bones out of this situation - but we truly didn't know what to search for.

Thursday afternoon, at Baptist, we had another US - after a long and mind-numbing wait for the doctor to see the images (he couldn't join the actual scan) and talk to us in a fluorescent-lit 4x4 nasty-purple-colored room, we heard that yes, Baby Boy has a condition called Transposition of the Great Arteries, or TGA.

Essentially, the condition prohibits the normal blood flow whereas oxygen from the blood is used up by the body, blood returns to heart, goes to the lungs to get more oxygen, returns to heart, and goes out again to the body, enriched. In Baby Boy, there are now two separate, disconnected blood flows - one, oxygen-rich, perpetually runs from lungs to heart (without reaching the body), one, oxygen-poor, perpetually runs from the body to heart and back (without getting needed oxygen); all due to misconnected aorta and pulmonary artery.

Right now, Baby Boy is fine because the oxygen he needs, he gets from me through placenta. Outside of mother's body, the condition is eventually fatal.

The solution as we know it now is to surgically reconstruct heart to an anatomically correct configuration through reconnecting the arteries to the right sides of the heart ('arterial switch'). Surgery cannot take place immediately after birth; to allow baby to recover and gain strength for long surgery, first a procedure is performed to create a hole in the heart to allow some of the blood to mix and get some oxygen to the body. 5 to 10 days post-birth, the surgery takes place; baby has to recover in NICU for a few days, then for some time under regular hospital care.

We will be meeting the pediatric cardiologist this Wednesday first thing in the morning for yet another scan (with him present) and a detailed description of the sub-type of this condition; whether or not any additional defects are discovered; and what our course of action is from here in terms of prenatal care and all things related to birth and his treatment.

I sound logical and aware; but this week has at times rendered us anything but. Through dealing with this, several things have come to pass. One - I have started to call him Baby Jack, though 'officially', we haven't agreed on a name at that point. I needed to have a name for him at least for now, so in prayer, I can call him by name; and Jack sounded so simple and strong, exactly what I feel he needs right now. I shared this with Allan, and he seems to like it.

Also, so many other life's stresses have by default moved to the back, into the recessed shadows - how clearly life's true priorities call out when you suddenly and tragically find yourself dealing with mortality percentages and doctors recounting various risks.

I have also been able to get so much comfort from Maya. As if knowing what's needed from her, she's vibrant, alive, cuddly, lit up from her tiny within - she lights the way and reminds me of what I'm looking forward to, when the worst is behind us.

Importantly, I have found tremendous comfort in faith and prayer. There's another sub-story that I'll have to leave for another time, that have left me speechless and in awe, and with absolute certainty that we will look back at this as a one-time event, later, when we're enjoying our lives with our two beautiful children. I'm not an unreasonable fanatic or a mother in denial; I know the facts too well (Dr. Schneider found it necessary to ask if I had background in medical education, I could keep up with all the nuances of the unraveling story well), but I place my trust where it hasn't failed me before, and being sure of Baby Jack's eventual well-being.

This post is wearing me out since I haven't written much in a while; plus, I can't yet do due diligence to our anguish, wrongly directed anger, confusion, weariness, hope, earnest support from close family and friends, all transfixed within the last few days. I rest well tonight knowing my son's heart is in the same hands that hold mine, and those have held me without fail.