Ariana MuÃ±oz has already seen more than her share of excitement in her 18 months of life, starting with the unusual circumstances of her birth. When her mother Nelly felt she was going into labor, her husband was away at work, and she hailed a mototaxi, the cheapest and most common form of transport in her sandy settlement of Villa El Salvador. Nelly laughs as she recalls how the driver, seeing her pregnant and in obvious distress, told her, “Just don’t give birth in my mototaxi, lady.” But the baby couldn’t wait; before they reached the hospital, little Ariana was born. At the hospital, doctors cut the umbilical cord and declared her a healthy baby, weighing in at just over 3 kilos.
But not long after taking her home, Nelly had a nagging feeling that something was not normal about her baby. “My heart told me that there was something wrong,” she says. “She snored like a cat in her chest, and she would drink milk and go to sleep for long periods of time without waking up to eat more.” She took Ariana to the hospital at six days old, but doctors again assured her that everything was fine.
One month after Ariana’s birth, Nelly noticed that she was having trouble breathing and rushed her to the hospital. When the doctor saw her, he told Nelly to run home and prepare a suitcase of clothes for her and Ariana, because they wouldn’t be leaving the hospital for a while. At one point, she went into respiratory distress, and had to be revived with a defibrillator. X-rays revealed that her heart was malformed from birth. She had to receive an operation immediately, and the doctor assured Nelly that they would do their best, but that she might not survive. “I had to leave her because they wouldn’t let me go into the operating room,” Nelly said. “But first I went to her, and I held her hands, and I told her ‘I love you and you will always be in my heart.’”
After hours of agonized waiting, the doctors emerged to tell Nelly that the operation had gone well and that Ariana was recovering. They wondered why Nelly had waited so long to bring her in; her heart was so tiny and weak that her organs had become agitated by breastfeeding. “They told me that I have grounds to sue the first doctors,” Nelly said. “If they had detected the problem earlier, it might not have gotten so bad.” In the overcrowded and underfunded public hospitals in Peru, this situation is sadly not uncommon.
Because of the heart defect, her development is delayed compared to other children her age. At one year and six months old, she spends most of her time lying down quietly, because the strain of walking and sitting up tires her out too quickly. Nelly tears up when she regards her younger daughter. “It hurts to know that she may never be like other children and able to do more things,” she says.
Ariana still needs a more complex corrective procedure for her heart, which will hopefully take place with the arrival of foreign surgeons to Peru’s children’s hospital this fall. If the operation succeeds, doctors have told her, she will be able to lead a normal life, though she will still have to be careful not to overexert herself. MEDLIFE field nurse Meri is hopeful after the success of a similar operation for our patient Eloy earlier this year.
Before she can go through with the surgery, Ariana has to reach a healthy weight of 12 kilos, a challenge in a home where the family eats just one meal a day, usually potatoes and rice. On a recent home visit, Meri brought pediatric nutritional supplements for Ariana, and negotiated with the local comedor to allow the family to take home a free meal every day. Ariana is now up to 9 kilos.
Providing even the basics for their daughters is difficult for the MuÃ±oz family, who have lived without electricity in a decaying shack in Oasis for six years now. Both husband and wife are from the mountainous provinces of Peru; Nelly came to Lima for a job as a domestic employee and met her husband here. Now she stays home with her daughters, Ariana and four-year old Maricielo, and collects junk and recycling to make some extra money. Nelly’s husband, Seferino, finds work in carpentry and construction when he can; it pays 30 soles (about $10) a day, with no health benefits. Seferino has epilepsy as the result of getting hit by a car when he was a teenager. The money paid as a settlement by the driver was spent by his family members before he turned eighteen, and so he endures occasional seizures with no medical treatment because he can’t afford it. “Any day he takes off of work is a day without food for our daughters,” Nelly says. Making matters worse, he risks losing his job and serious injury if he experiences a seizure while at work. Seferino is also entering MEDLIFE’s patient follow-up program, and we will be connecting him with neurological treatment for his condition.
In the midst of all this tragedy, Nelly struggles to remain positive. “Sometimes when I see Ariana happy, it makes me happy,” she says. “But sometimes I cry alone thinking about how we are going to survive. Ariana can feel when I am sad, and she touches my face to check for tears.”