Anya Coronel

Anya is my baby. Now, she is in heaven.  On April 18. 2009, Anya was born in Los Banos, Laguna, a science and nature town 60 kilometers south of Metro Manila, Philippines.

At my fifth month of pregnancy and during my routine ultrasound scan, my OB-Gyne noticed water in Anya’s head. The doctor told us that the baby might have hydrocephalus and advised us to see a neurosurgeon.

My husband and I went to see a neurosurgeon in one of the Philippines’ best hospitals. What he told us was quite devastating – Anya had hydrocephalus and with that amount of fluid in her brain, she might have myelomeningocoele, or a birth defect where the spinal cord does not completely close. At this point, my husband and I were sad and happy at the same time – we were going to have a baby, but the baby may not be well.

When Anya was born through a ceasarian procedure, we found out that she had both defects – hydrocephalus and myelomeningocele or the condition called spina bifida.  My baby, who yelled a wholehearted cry, looked especially cute, showed clear vitals, weighed 3.38 kgs, and actively moved her hands and grasped on to whatever she could hold. An hour after she was born, she had to be transferred at the Philippine General Hospital (PGH) in Metro Manila, where the experts in her condition would take a look at her.  My mom and my husband went with Anya in an ambulance, and I was left in the hospital in Los Banos.

After two days, Anya underwent her myelomeningocele repair, a neurosurgical procedure that would close her open spine. After a week, she underwent cerebral shunt, a procedure wherein a shunt will be placed in her head. With a shunt, the fluids in her brain would drain and this was supposed to normalize the size of her head. Aside from these, she had jaundice, was hypothermic and was observed for infections.

For a first time mom, this brought me mixed emotions – though she has an open back and a head as large as a six-month old baby, Anya was perfect. After two neurosurgeries, two weeks at the country’s largest government hospital and more than US$5000 of expenditures, we were able to go home very happy.

Anya seemed to be a normal baby without any defect. She was able to hold her feeding bottle at day nine. She would sleep, cry, feed breastmilk vigorously. She loved taking baths which soothed her. We only had problems on changing the cover of her sutures and on making sure that she was clean all the time because her condition was prone to infection. She would sleep to Ennio Morricone’s Cinema Paradiso, and would cry everytime the music stopped. And would go back to sleep again once it was on.

After two days at home, I noticed that she had a fever. I went to her pediatrician and got in touch with her neuro-pediatrician because of her fever. After a week from PGH, we were back at the local hospital. I was warned that her condition was prone to sepsis. Anya was placed in IV with lots ofantibiotics. My frail but brave baby underwent needles and antibiotics again. It was really heartbreaking for our family.

After a few days, we needed to go back to PGH because the local hospital did not have enough facilities for her condition. She had never ending hiccups, which was a sign of neurological abnormality, was hypoglycemic (low blood sugar)and hypothermic. Back in PGH, her doctors checked her spinal fluid, which was infected. She acquired MRSA wherein her fair skin was covered with lesions and wounds. Her shunt seemed to fail which made her tummy really big.

My beautiful baby was incubated and was placed in the pediatric ICU. In the ICU, I was told that she was suffering from sepsis, and her infection was severe even for an adult. The expenses were staggering but help from friends, strangers and family were always there – money, medical supplies and blood donors alike. My husband and I stayed there and slept on the floor. We bought medicines, even the most expensive ones. We asked for blood donations because her sepsis infected her severely, and her blood has to be replenished. Her skin looked burned with lesions and wounds. Her infection was too much.

For three weeks in the ICU, there was no progress or hope of progress. Her spinal fluid was colored yellow, her urine output was filled with blood and she rejected the new blood that was being transfused in her. We were with her every day, holding her hand and telling her we love her.

Anya had several cardiac arrests, but was always able to wake up every time the nurses and doctors gave her CPR. Until one time, my husband and I were allowed to be with her because of her cardiac episodes. My husband and I felt that this was goodbye. We told Anya that if Jesus wanted her to go back home in heaven, we will not be lonely here on earth. She can walk and swim and bike in heaven. Afterwards, her heart rate went down, but our baby was smiling at us. And that was goodbye.

Anya succumbed to multiple organ dysfunctions caused by her condition, spina bifida, MRSA and sepsis. Her 52 days in this world was filled with love and hope.

Source: by Ella Kristina D. Coronel (Anya's mom)