A Tiny Twin Fights for Her Life

The twins were tiny. Born at 38 weeks, Sophia weighed three pounds, 11 ounces. Her big sister, Athena, tipped the scales at four pounds, 15 ounces.

For their parents, Angie and David Aghighi, the celebration after the cesarean section March 16, 2000 was short-lived. "Sophia went to the ICU [intensive care unit] right away because she was having trouble breathing," remembers Angie.

That evening nurses brought little Sophia back to her mother’s room, where she was reunited with her sister, father and mother. But the reunion quickly became a nightmare for the first-time mom. Her voice trembles at the memory. "Sophia was lethargic, pale and cold. I knew something was terribly wrong. I insisted they take her back to the ICU for more testing. But they wouldn’t. They said the doctors had released her. That her heavy breathing was because of her low birth weight." Angie collects herself, before continuing. "I told them, ‘This baby is going to die if you don’t do something quickly! And I’m going to hold you responsible!’"

In spite of these pleadings, nurses wheeled Sophia back to the nursery. Less than four hours later, however, 36-year-old Angie and 42-year-old David learned that their daughter’s condition had worsened. She was back in the ICU. An echocardiogram revealed Sophia had two congenital heart defects. Her aorta, which carries blood from the heart to the lower body, was pinched -- a condition known as "coarct" or coarctation of the aorta. Echocardiogram results also showed that Sophia had an opening between the two lower chambers of her heart – a congenital defect known as ventricular septal defect (VSD).

"I had a mother’s little instinct. The doctors did the miracles."

Less than a week old, Sophia was taken by ambulance to UCSF (University of San Francisco) Medical Center. Here cardiothoracic surgeon Frank L. Hanley, M.D., who specializes in congenital heart disease, operated on Sophia’s tiny aorta. The arduous surgery was a success, Sophia returned to the hospital of her birth – California Pacific Medical Group.
But a second surgery was soon required. Sophia’s weight dropped to less than three pounds. Again, Dr. Hanley performed the surgery. Pacing back and forth outside the operating room for seven hours – the duration of the intricate procedure to repair Sophia’s VSD – was David. "He was strong around me, but I knew he’d be devastated if we lost Sophia." says Angie. "He followed the ambulances back and forth. He made sure everything was okay while I looked after Athena.

"I cried for days and days. It was terrifying," she continues. "I had a mother’s little instinct. The doctors did the miracles." 
 
"I didn’t know if I could do it. She was so tiny."

"When Sophia came home and she was alive, we were thrilled," says Angie. "But for me, it was also very scary. She was so tiny. I didn’t know if I could do it."

Nearly five weeks old, Sophia still weighed less than four pounds. "She was very fussy. She wouldn’t sleep and there were long crying spells," remembers Angie. And because Sophia wouldn’t take her milk from the breast, Angie had to pump. "I was a working cow," she laughs. "Luckily, I had lots of milk."

Getting Sophia the nourishment she needed, however, was a laborious process because her tiny stomach couldn’t handle more than one ounce of milk at a time. David did all the night feedings, reports Angie, who adds admiringly, "He can do it all. And he’s more patient than I am."

At first the "girls" shared a single crib in their parent’s room. But when Athena began sleeping through the night at three-and-a-half months, she graduated to her own room. Sophia, on the other hand, continued to wake up several times during the night for feedings until she was nine months old.

 "I miss their tiny feet"

One year later, both girls are thriving. Athena is still the bigger and stronger of the two, but Sophia, who weighs 16 pounds and then some, is her equal in every other way. And while the sisters have their share of squabbles, the two have become friends. "Whenever Sophia cries, Athena will come to her, if she can, and sit down next to her," says Angie. "And Sophia cries whenever Athena does."

Sophia still has a heart murmur, but it’s a condition she may outgrow, says Angie. "Our only real concern at this point is that she may develop high blood pressure as an adult. The doctors tell us that there’s only a small chance that her coarctation will return. Hopefully she won’t have any other health issues in her life or need any more surgeries."

To celebrate how far they’ve come in year’s time, Angie and David Aghighi threw a big birthday bash for their daughters. "As I was preparing for the party, I couldn’t help crying. The early days were so dark. We survived on a lot of patience. And somehow, we managed to laugh. I learned that it’s best not to dwell on your hardships or compare yourself to others. Now, my girls are growing up and I miss their tiny feet."