Carlos

My son, Carlos, was diagnosed with a heart problem while I was 19 weeks pregnant. We went for an echo the following week and were told that our baby boy had Tetralogy of Fallot with Pulmonary Atresia but could not tell if the left and right pulmonary arteries were tied together or even existed. I had just had an amniocentesis the week before and she recommended that they also test for DiGeorge Syndrome and that my husband and I be tested for DiGeorge. Carlos tested positive, my husband and I tested negative. After reading too much on the internet, we were devastated. Then we met with a geneticist who informed us that not all the things listed under DiGeorge apply.

As far as the heart problems, we were told that he would immediately have surgery to keep the ductus arteriosus intact to supply the pulmonary arteries. So, we planned for delivery down in LA and for Carlos to have surgery immediately. We were not sure what his outcome would be.

During my pregnancy I was also diagnosed with polyhydromnios (too much amniotic fluid) and the doctors believed I would probably deliver early. My due date was February 23, 2007 — my water broke at 11:20 p.m. on Tuesday, January 23rd (1 month early) and Carlos was delivered on January 24th. He weighed in at 6 lbs, 10 oz and was 19 inches long ? not bad for a preemie. I was only able to see him for a few seconds before they whisked him away to the NICU. He was taken later that day to Children's Hospital Los Angeles.

The doctors at CHLA still could not tell, even after Carlos' birth, if he had connecting pulmonary arteries. This was frustrating for us as we still did not know what to expect. They needed to know prior to his surgery which would be that Friday or Monday, so they performed a catheterization. To everyone's surprise, Carlos had MAPCAs (Major Aorto-Pulmonary Collateral Arteries) which served several different areas of his lungs. The doctors determined that surgery would not be required until he was bigger (6-8 months) and that he could go home as soon as the rest of him checked out. We were elated — never in the past 4-1/2 months was taking our baby home without heart surgery an option.

He stayed in the hospital a total of 10 days — during which time we found out that he did not have a cleft palate; he did have jaundice for 2 days; he was hypocalcemic and put on high doses of calcium and magnesium. He left the hospital weighing just under 6 lbs. Once at home, his calcium and magnesium levels were cut down and his appetite increased significantly. After 2 weeks at home he finally weighs 6 lbs 10 oz and growing.

We know that we are not out of the woods but we now feel we have a solid diagnosis and can plan for his future surgeries with somewhat of a sound mind. We feel truly blessed to have our Baby Carlos.

November, 2007

Carlos passed away on Monday, November 12, 2007 during surgery to repair his heart.  He had been in the hospital since July 12, 2007 for pneumonia followed by several lung infections.  Unbeknownst to his doctors and to us, his lungs were severely weak for the surgery and he did not make it.  

We feel blessed to have had our little angel in our lives for 9 months.  We believe he is in heaven playing with the angels.  We love you dearly, Carlos and you will forever be in our hearts.  Mommy, Daddy & Angela.