Amaia Camila Declet-Arroyo Amaia Declet-Arroyo

First post: Apr 6, 2017 Latest post: Apr 8, 2017
Our April 4, 2017 began with us looking forward to flying to Boston to meet up with our friends and their children at the geography conference. Amaia had lost some weight and been all kinds of fuzzy over the last two weeks, so we stopped by her doctor in the morning thinking she would get some antibiotics for a stomach bug and we would be our way.

Instead, the doctor called the National Children's Hospital and told them we were coming. Amaia had not wanted to nurse for too many hours now, had not soiled a diaper for a while, and her constant grunting told the doctor something was wrong.

At the ER, things got jarring quickly. The blood, stool, and urine work did not reveal any infections or much else. Doctors ordered an IV and when the IV kicked in, her grunting and difficulty breathing got worse. At that moment, a lot of medical professionals started coming and going into our room. We got scared when we saw what looked like paramedics standing back ready for action, gloves on, ready to go. It was obvious to us they were waiting for our Amaia to crash so they could jump and aid her... but thankfully that did not happen.

Cardiologists explained to us that Amaia had a rare condition called "cor triatriatum", which means "three atria in the heart" (instead of two!),  a congenital malformation in her heart in the form of tissue was lapping against the septum (one of the holes in and out of the ventricular atria) and that was making the blood flow difficult, and worse, it was making fluids flow into the lungs.

The surgeon told us very flatly that we either allowed her to be operated on to remove the tissue, give her a blood transfusion, and rebuild the septum, or her heart would collapse at any moment and she would not live. There was no decision to make, no choice. I know the hospital makes one sign consent because there are people who have religious or other objections to blood transfusions or surgery. Bertha believes in God and science; I believe in science and trust the medical professionals to do what they do best. I looked each of them in the eye before they took her and saw confidence and professionalism. I pleaded to them silently to bring my girl back to me safe. They did.

Amaia spent 6 hours in the operating room. She came out around midnight and we saw her little, fragile but unfathomably resilient body fight for her life. She's not entirely out of the danger zone - the next 48 hours will determine that.

We thank all of you, blood family, extended family, and friends for your messages and offers of support. Please check this space for updates and understand we may not be able to message or callback each of you personally. Our priority right now is making sure our little Amaia comes back to the light.

I like to think of Sophia and Amaia, our girls, as "the lights of Eärendil, our most beloved stars... they are lights that shine in the darkness when all other lights go out". More than one of you may know what that references.

Thanks to all!

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