Lianne Milton

COMMISSIONS: Baby Duda: a year in the life of a Zika baby

 

BABY DUDA: a year in the life of a Zika baby 

For The Washington Post, and Stat News. Also see Duda's one-year story for Stat News. 

Exhibitions: Les Editions du Mars exhibition on Women’s Rights (invitation); Lyon, France; Brazil’s Zika Babies (invitation), Universal Health Care Forum / UNDP, Japan. 

Three days after Maria Eduarda “Duda” was born, Mirian Pereira, the sister of Duda’s biological father, found the newborn abandoned by her parents at the maternity hospital, and likely left to die. Mirian had just recovered finished treatment from leukemia when Duda "came into her life". She scooped her up and took her to the pediatric hospital. There, Duda then began to have seizures in the arms of Dr. Regina Coeli, director of the children's infectious diseases at the Oswaldo Cruz University Hospital. She was severely malnourished and dehydrated, and born with zika-related mircrocephaly.  

First detected in late 2015, the mosquito-borne Zika virus continued to spread in Brazil throughout the following year, alarming health officials and expecting mothers that their babies will be born with an abnormal brain development called microcephaly.  

Brazil accounts for 92% of the 2300 worldwide cases of zika-related microcephaly. In Brazil, nearly 90% of the country's 1,749 Zika-linked microcephaly cases are in the Northeast, according to the Health Ministry (July 2016). While researchers have yet to make a connection - most of 90% of cases are concentrated in the Northeast city of Recife - from mothers who tested positive to the Zika virus in their first trimester. 

I first met Duda and her family, Mirian and her daughter-in-law, Cleane Silva, 18, at Oswaldo Cruz on January 8, 2016. Duda had been in the hospital for the 27 days of her one-month old life. “It was my destiny,” said Mirian. “My kids are grown and I knew Duda would be sent to an orphanage.”  

Duda was one of the most severe cases of the Zika babies. She eventually was hospitalized seven times by the time she was eight-months-old. 

Cleane quit school to help Mirian raise Duda. While she does most of the rearing -- the bathing, the at-home therapies, changing diapers it is Mirian who has legal custody of Duda. The judge told her, Duda doesn’t need a guardian. She needs a mom and she needs you. The judge granted full adoption. Duda’s biological parents suffer from alcoholism and mental health issues. They earn a living as recyclers. (*It is common in poorer communities that Brazilian teens live with their boyfriend’s family).  

“Thank god Duda is with us because if she’s with them, she would have died,” said Cleane. 

  • JANUARY 8, 2016 -- Cleane Silva, 18, holds one-month-old Duda who was born with zika-related microcephaly, at the University Hospital of Oswaldo Cruz where the newborn recovers from severe malnutrition, in Recife. Cleane's mother-in-law, Mirian Pereira, became guardian of Duda when the baby was abondoned at birth by her brother and his wife at the maternity hospital.
  • JANUARY 8, 2016 -- Cleane Silva, 18, holds Duda at the University Hospital of Oswaldo Cruz. Cleane and Mirian rescued the newborn who was abandoned at birth by her brother and his wife at the maternity hospital.
  • JANUARY 8, 2016 -- Cleane Silva, 18, holds Duda at the University Hospital of Oswaldo Cruz. Cleane and Mirian rescued the newborn who was abandoned at birth by her brother and his wife at the maternity hospital.
  • JANUARY 8, 2016 -- After spending 27 days at the University Hospital of Oswaldo Cruz, Duda has recovered and is released to go home. Cleane and Mirian rescued the newborn who was abandoned at birth by her brother and his wife at the maternity hospital.
  • JANUARY 9, 2016 -- Mirian and Cleane live in this one-bedroom house in Olinda, 30 min north of Recife, with Mirian's son. The closet is stocked with clothes, diapers and baby care - donations given by individuals who heard of Duda's story in the local media.
  • JANUARY 9, 2016-- Mirian Pereira, 40, quit her domestic housekeeping job ,where she cleaned homes of Recife’s well-to-do families, to be a full-time mom to Duda. As a single parent, there was no way she could return to work in between Duda’s therapies and medical needs. Mirian receives government Zika assistance $927 Reais / month for Duda. A state judge also donates through an NGO after seeing their story in the local news. That money goes coveres Duda’s seizure medication Her son, Fernando Torres, 19, works at an auto shop full-time to provide for the family.
  • JANUARY 9, 2016 -- Cleane bathes Duda, her second-day at home from the hospital. Water is soothing for most Zika babies, and calms their incessant crying.
  • JANUARY 9, 2016 -- Cleane brings Duda over meet the baby's biological mother, Maria Rodrigues, 29, who abandoned Duda at the maternity hospital because she couldn't care for her daughter, in their tiny one-room home, in Olinda. Both Maria and her husband, who are recyclers, suffer from a mental disorder and alcoholism.
  • JANUARY 9, 2016 -- Maria Rodrigues, 29, and her husband, Romero Perreira, 39, and their daughter, Veronica, 10, left, visit with Duda, the baby's biological parents who abandoned Duda at the maternity hospital because she couldn't care for their daughter, in their tiny one-room home, in Olinda. Both Maria and her husband, who are recyclers, suffer from a mental disorder and alcoholism.
  • January 9, 2016 -- Cleane decided to quit school to help Mirian raise Duda. At this time, she has no plans to return to school.
  • JULY 25, 2016 -- Dr. Regina Coeli, director of children's infectious diseases, checks in on Duda, now eight-months-old, with Cleane and Mirian, at the Oswaldo Cruz University Hospital. Duda was hospitalized for a lung infection created by complications from seizures. She hasn't been able to swallow food, so doctors placed a food tube in her. Duda has been hospitalized every month since she was born as her caregivers and doctors discover new health issues. According to doctors, Duda has one of the worse cases of zika-related microcephaly.
  • JULY 25, 2016 -- Veronica Pereira, 10, watches her sister, Duda, under the care of Dr. Regina Coeli, director of the children's infectious diseases, at the Oswaldo Cruz University Hospital, in Recife. Duda was hospitalized for a lung infection created by complications with seizures. She hasn't been able to swallow food, so doctors placed a food tube in her.
  • JULY 25, 2016 -- Dr. Regina Coeli, director of the children's infectious diseases, review's baby Duda's X-ray where it shows her feeding tube bent in the wrong position, at the doctor's office, at Oswaldo Cruz University Hospital in Recife.
  • JULY 25, 2016 -- Cleane comforts Duda after doctors remove a feeding tube that bent because it was too large for her, causing discomfort. Duda was hospitalized for a respiratory infection due to her seizures, at Oswaldo Cruz University Hospital in Recife.
  • JULY 25, 2016 -- Dr. Regina Coeli explains to Cleane Sand Miriam that the hospital ran out of smaller feeding tubes which the infant needs to eat with because of her infection, and they will have to replace the large one to see if it will fit better in her body.
  • MARCH 15, 2017 -- Miriam and Cleane woke up at 6.30am to get in line early at Association for the Disabled Child (AACD) for Duda's new orthosis, in Recife. Cleane is now 19, and Duda is 13 months. A technician will make moulds of Duda's ankles and feet for new orthosis, a corrective ankle-foot brace. The hospital is a non-profit that provides this care and service for free to families. Duda's previous lung infection has cleared up and her seizures are now under control with medication. She now weighs 16kgs, about 35lbs.
  • MARCH 15, 2017 -- A technician removes the mould from Baby Duda's legs, who is now 16-months-old, to make moulds of Duda's ankle and feet for new orthosis, a corrective ankle-foot brace, at Association for the Disabled Child (AACD), in Recife. The hospital is a non-profit that provides free services for families in need. Duda's previous lung infection has cleared up and her seizures are now under control with medication. She now weighs 16kgs, about 35lbs.
  • MARCH 15, 2017 -- Physical therapist Mayra Barata works on Baby Duda's posture at a physical therapy session at Oswaldo Cruz University Hospital, in Recife. Miriam and Cleane waited nearly 3 hours this session. They arrive early to be the first in line to meet with therapists. During this time, they catch up with other mothers who have children with zika-related microcephaly, and share their knowledge and discoveries as their babies encounter changing health issues. They talk about the latest concerning issue now, hydrocephaly - when there's too much water in the brain.
  • MARCH 15, 2017 -- Physical therapist Mayra Barata works with Baby Duda during a session at Oswaldo Cruz University Hospital, in Recife. Miriam and Cleane waited nearly 3 hours this session. They arrive early to be the first in line to meet with therapists. During this time, they catch up with other mothers who have children with zika-related microcephaly, and share their knowledge and discoveries as their babies encounter changing health issues. They talk about the latest concerning issue now, hydrocephaly - when there's too much water in the brain.
  • MARCH 15, 2017 -- Miriam and Cleane wait for Duda's physical therapy session at Oswaldo Cruz University Hospital, in Recife. They arrive early to be the first in line to meet with therapists. During this time, they catch up with other mothers who have children with zika-related microcephaly, and share their knowledge and discoveries as their babies encounter changing health issues. They talk about the latest concerning issue now, hydrocephaly - when there's too much water in the brain.
  • MARCH 15, 2017 -- Miriam and Cleane wait for Duda's physical therapy session at Oswaldo Cruz University Hospital, in Recife.
  • MARCH 15, 2017 -- Although Duda's eyes are sensitive to light and tends to keep her eyes closed, she is mesmerized by its rays and the feeling on her skin, in Recife. Duda has very low vision; she can only see up close and in black and white. Dr. Regina Coeli, director of children's infectious diseases at Oswaldo Cruz University Hospital, said that limited hearing and vision interfere with her development because it is harder for her to be stimulated during the therapies. However, her glasses and hearing aides have helped a lot.
  • MARCH 15, 2017 -- A view of Olinda and the ocean from the second level of their home, on Wednesday, March 15, 2017. A local community politician decided to help her family build additional rooms upstairs and is nearly finished. The rooms have light and breeze that comes off the ocean, unlike downstairs where there is little ventilation.
  • MARCH 15, 2017  -- After Duda's bath, Cleane lays her on the bed to rest at home in Olinda. A local community politician decided to help her family build additional rooms upstairs and is nearly finished. The rooms have light and breeze that comes off the ocean, unlike downstairs where there is little ventilation.
  • MARCH 13, 2017 -- Duda's anti-seizure medication. Duda’s Medical Needs:Hearing aid R80/piece. She needs new molds for her ear every two months as she grows; Asthma inhaler; Exercise on non-therapy days - her posture has improved in two months;Feet brace to support her legs; Glasses, darkened lenses so the bright lights don’t irritate her; Anti-seizure medicine; Thickener for water; Protein-enriched flour; Milk of Magnesium for constipation; Anti-acid; Two types of anti-reflux; Vitamin C
  • MARCH 16, 2017 -- Miriam and Duda at home, in Olinda. A few days prior, Miriam officially became the adoptive mother of Duda. She said the judge didn't give her the option to be just a guardian -- Duda needs a mom.
  • MARCH 16, 2017 -- After Duda turned one-year, and doctors began treating her seizures, Duda ate better and grew faster. Before she “breathed” the food - which caused lung infections (JULY) because she couldn’t swallow which triggered the seizures. But now the seizures are controllable and she is learning to swallow. Mirian is searching for private medical insurance however she faces an uphill battle. Insurance companies have denied her applications because Duda’s microcephaly is considered a pre-existing condition. However in public care, Mirian said that the doctors are quick to dismiss therapy when there’s slight improvement. Mirian wants Duda to have more therapy. “We have everything for Duda. Thank god to this day I’ve never had to ask for help because we’ve always had enough for Duda. We don’t seek help from NGOs, because we have enough and we don’t want to take away from others who are in more need.”
  • MARCH 16, 2017 -- Cleane practices exercises at home with Duda on days when she doesn't have therapy, in Olinda. Duda cries during positions that are uncomfortable or require her muscles to work harder. Since August 2016, Duda's lung infection cleared up and her seizures are now under control with medication. In the last few months of this year, Duda has improved her strength to sit up by herself and she is eating much more. {quote}It’s wonderful to take her to therapy and see the results,{quote} said Cleane.
  • MARCH 15, 2017 -- Cleane carries Duda, who weighs 16kgs, or about 35lbs, from the tub. The family stores clean water in an open container in the bathroom, but they go through the barrel of water fast enough to refill it every week when they receive water. They said the city stopped passing out free bacteria that kills mosquito larvae sometime after January this year.
  • MARCH 15, 2017 -- Cleane dresses Duda after a bath. {quote}I love my life. It’s not as difficult as I thought it would be. For me, life isn’t as different as other 18-year-olds. I think of Duda as my daughter. I hope she evolves and develops to walk, to see, to hear. If she can see and hear, she can develop faster. She doesn’t know if she will marry Fernando but he loves her and they are very close. She already thinks they are married. The hardest part is carrying Duda because she is very heavy, at 15 kilos.{quote}
  • Ground Zero of the Zika Virus (For The Washington Post)[caption] MARCH 15, 2017 - Cleane with Duda at home. Cleane spends all of her time helping Mirian care for Duda. She stopped going to school when she and Miriam decided to raise Duda. And it has become a full time job of going to therapies, appointments, in-home physical therapy practice, and navigating through a limited healthcare system. I love my life. It’s not as difficult as I thought it would be. For me, life isn’t as different as other 18-year-olds. I think of Duda as my daughter. I hope she evolves and develops to walk, to see, to hear. If she can see and hear, she can develop faster. She doesn’t know if she will marry Fernando but he loves her and they are very close.{quote} She already thinks they are married.
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