Originally published on 3/14/2004 by O Estado de Sao Paulo
EDUARDO NUNOMURA
A glass door separates the outside world from the universe of special care. At the wide hallway of doors identified by plaques, the men and women in blue, brown and green aprons walk around busy. To walk into this environment for the first time is distressful. Behind the doors, all you can see are clear plastic boxes connected to a bundle of wires, tubes and medical equipment. Inside the boxes are minibabies, unbelievably small. You can barely hear their crying. Only the bipping of the machines. The faces of the parents do not hide their worries. But only doctors and nurses are used to it. They know that in those boxes, a struggle for life goes on with every precious minute.
For one week, the Estado de S. Paulo followed the routine of the Prenatal Unit of the Maternity-School Vila Nova Cachoeirinha, in the north side of São Paulo. Differently from an Intensive Care Unit (ICU), where doctors often fight to delay death, in the minibabies unit the battle is for the continuation of a newborn life. It’s an endless work, filled with tension and stress. But the day by day victories make it worth. These are not measured by the breathing rates or by the jolt-free heart beats of each incubator. They are measured by the number of visits of parents who return, full of pride, to show how their kids are now safe and well, ready to grow up.
The maternity opened in 1972 as the first high risk unit in Latin America. Pregnant mothers in need of special care are sent there as a reference. They suffer from diabetes, hypertension, heart illness, malnutrition, kidney problems, urinary infection, or have a history of risk pregnancies. In these situations, the babies can come too early into the world, prematurely. Or they can be born sick, and require attention from the first minute after birth.
Day 1
At 10 a.m. of the first day, February 13, Rosinete Alves da Silva enters a pre-delivery relaxation session. Helped by doctor Adalberto Kiochi Aguemi, the housewife started suffering from pregnancy hypertension from the sixth month. Fifteen days ago, the 29 year old was taken to the Casa da Gestante (Gestation House), a place in the maternity reserved for mothers considered to be at high risk. Hospitalized as a precaution, the idea is to avoid the chance of any sudden health problems happening away from medical attention.
Rosinete, who already had a daughter born by natural childbirth, suffered a peak in blood pressure the night before and had to be taken upstairs to the delivery room. Doctor Aguemi tells her that they will try to delay the birth of Alan as much as possible. Half of the deliveries at the maternity are natural birth. A cesarean section is only performed if the baby appears to be suffering. Meanwhile, the future mother relaxes in a giant plastic bubble and over a “cavalinho” (little horse), an iron chair with pillows that supports the spiral column. “I think I am in good hands. I’ve been well treated since I arrived here.”
One floor up, doctor Pedro Alexandre Breuel receives a visit from 33-year-old Ednéia Silva Paulo Ferreira and her son, Wendel Gabriel. Born prematurely at 32 weeks, little Wendel is now 8 months old, weighting 6,5 kilos. He doesn’t even seem the same boy that came out of the womb with 1,290 grams, spent three days in the ICU and another week in the semi-intensive unit. “I only have to thank God. I was very afraid I wouldn’t have him in my arms”, says the mother. “We fight so hard to save these children, and to see them come back here, growing healthy, is a great victory. More than a doctor, I am a father to many of these babies here”, says Breuel, who is in charge of the semi-intensive unit.
In a reserved room, doctor Cláudia Tanuri, responsible for the prenatal ICU, talks about some of the cases with residents and staff. There are 11 babies, 5 stricken by illness, 4 premature and 2 in observation. Victor, in Room 3 of the ICU, is the one who requires the most attention right now. Resident Andressa Lozano helps to read the boy’s medical chart, born at 30 weeks and weighting 1,295 grams.
Victor’s lungs were compromised at birth and he suffers from breathing discomfort disorder. In the next few days, the organ will have to be forced into proper development. “He will be all right, he’ll be fine”, cheers up the resident. “We have to watch him with four eyes now. We have to be on maximal attention for everything, any blink, any thermal instability”, advises doctor Claudia. “We have saved other babies in worse situations.”
On this day, as in any other, doctor Denise Lopes Santos visits the prenatal unit. She is on the watch for hospital infection, the worst enemy of baby wards. Because it is an Amigo da Criança (Friend of the Child) hospital, which requires it to humanize all treatment procedures, the maternity allows parents access to the prenatal unit daily, from 8 a.m. to 10 p.m. Despite all the caring and loving that they take to the newborns, they can also carry invisible bacteria. And so can the professionals. In order to reduce the risk of infection, no one is allowed into this place without washing their hands first with liquid soap and alcohol.
Day 2
Because it is also a school, the maternity at Vila Nova Cachoeirinha gives special attention to the formation of prenatologists. Nowadays, there are seven resident doctors. On top of the daily practice of caring for the minibabies, they receive classes and training. One of them covers reanimation techniques: what to do in the case of a cardio-respiratory emergency, how to put a tube into a child’s airway (endotracheal intubation), how not to lose her forever. Doctors Cláudia Tanuri and Pedro Breuel voluntarily orient the students with baby dummies.
At the prenatal unit, nursing chief Jomara Farias Pereira checks if everything is running in perfect condition. The maternity operates on 16 beds at the ICU, 12 at the semi-intensive unit, 12 on special care and 44 on the combined rooms. It could expand these services if there were more equipment and professionals. In one hallway there are nine incubators and ten phototerapy machines, the “octophoto” and the “bilispot”, waiting to be fixed. A bureaucratic wait that stops more babies from being saved.
But Jomara, a nurse with 15 years of service at the maternity, has other concerns. One of them is how to interact in an environment where professionals and parents run into each other all the time. When a nurse prepares to lace and pick a vein, the child cries a lot and parents feel afflicted. “In a lot of cases we ask them to leave. Sometimes we seem to act aggressively, no matter how careful we are”, she admits.
The young Fabiana Mello, 20, feels like that sometimes when she returns to see her child with an endotracheal intubation. Babies at high risk go on several for days switching between natural and artificial breathing, by the use of tubes. Sometimes, they are so tiny that they just forget to breathe. Carlos Henrique was born with 740 grams and a standard 6-8 APGAR. That means his “score” of vital signs in the first minute after birth was 6, and in the fifth, 8. On Feb. 3, nanny Fabiana fell on her bottom and broke her water. She hadn’t even bought any baby clothes yet when she found out she would have to give birth in a hurry.
The doctors injected prenatal corticoids into Fabiana before delivery. The first cry of Carlos Henrique was very faint, almost a “meow”, as she recalls it. “I started crying when they took him from me. Only the following day I went up to the ICU to see him. I had never seen anything like it.” In her mind, questions that go through the mind of every mother of a premature baby: “What is going to happen after he leaves the hospital?” or “Will he carry any sequelae?” Many times over, she has felt overrun and incapable of dealing with the situation. “It was horrible, it is horrible, but I pray that we can get out of here together.”
Day 3
Six weeks pregnant, nursing assistant Helen Soares de Toledo is feeding João Arlindo, a 3,400-gram baby. His APGAR score was 2-7, which forced the doctors to send him to the ICU as a precaution. Three days have passed and he has shown no sign of illness, so he will be transferred to semi-intensive care. “When he is little and he is fine, we feel more relaxed. But I get particularly aggravated when I see a large baby in the incubator”, confides Helen. For a reason: she herself has already lost two other babies, one of them in the ninth month.
On this day, two other children checked into the prenatal ICU. One was born at dawn with little more than 36 weeks and 2,130 grams, whose twin brother, a little smaller, with 1,770 grams, had better luck and was sent directly to semi-intensive care. The second baby was born “term” (a normal baby), which in the medical jargon means 40 weeks of gestation. The health condition of the mother makes a difference in many cases. At the Cachoeirinha maternity, one in each four babies ends up in the prenatal unit, while the average of a conventional hospital is 5%.
“We live in a very rich environment, because we deal with human suffering and sometimes we can minimize that with just one word”, explains doctor Miriam Faria Silveira, manager of the prenatal unit. Is it possible to give hope to all parents? “We always keep hoping, as long as there is life. We work with the parents so that they are kept informed and are supported throughout their stay here, and so that they don’t stay away from the babies unless it’s a very serious case.”
Day 4
Nurse assistant André Lima Urtado, 25, seems amazed while dealing with the miniscule babies. He talks to them as if they were his children. With his large hands, Urtado knows that he has to be extra careful when handling the baby in the incubator. Having to be more delicate doesn’t stop the parents from caressing the minibabies. “They also are very sensitive to the touch”, he advises.
In another room, doctor Vera Cerruti teaches three mothers on how to behave now that their children will be discharged. She reminds them that the medical follow up will be fundamental for the development of the babies. Because they were born premature or with some illness, babies that come out of the prenatal unit may be a little late to start speaking or walking, but with professional help they can overcome that difference. “But the worse is already past, which were the nights. It was crazy not to know what could happened to Ingrid when I left”, tells Priscila Lopes Rezende, a 16-year-old teenager and mother of Ingrid.
Twenty-five-year-old housewife Ana Paula da Silva Rodrigues lived through all of that. During a visit to the ambulatory to weight Giovanna, now a strong girl at 1 year and 7 months, she takes the opportunity to visit doctors and nurses. The baby spent 48 days in the ICU and 3 in semi-intensive care. “Before she was born they told me they could guarantee my life, but not hers. How does a mother feel after hearing that? I felt that I wouldn’t see my daughter.” Giovanna was born with 975 grams. There were days in which she gained 10 grams. And Ana Paula could only cry. Today, she carries her little girl with pride, with her 9 kilos.
TRAINING – The weight is gained with a lot of breast milk. This is when doctor Vera comes in, teaching the moms how the breastfeed their minibabies. Already at the semi-intensive unit, the newborn can feed on the mother’s breast. But he still has to learn how to do that. Eliana Souza Menezes and Claudia Pereira de Lima, the mothers of Diego and Yasmin, respectively, listen to the instructions. One of the techniques is called digital suction: using surgical gloves, Vera puts a little tube on her little finger and inserts it on the baby’s mouth. With the other hand, she controls the amount of milk coming out of the syringe. “They don’t have the biological clock and, sometimes, can sleep too much without wanting to feed”, she says.
During the 24 hours of an ICU, there is always a physiotherapist on duty. They are there to make the life of the premature or sick babies a little more comfortable. For that, they try to keep the children in a quasi fetal, curved position; they clean the fine respiratory tubes and manually stimulate the babies. “In the case of premature babies, they don’t know how to do practically anything, because they would have learned that in the final weeks of gestation”, explains physiotherapist Claudia Almeida Silva Giannattasio.
A little after noon, Victor, the baby in the more delicate situation, is subject to a thoracic draining procedure. In the morning he was stable, but suddenly his fragile lungs stopped working properly. Right at birth he acquired an infection that made his condition even more serious. The doctor on duty, Francis Mary, tries for more than an hour to revert the pneumothorax, the third one in his 16 days of life. Victor goes into cardio-respiratory arrest and dies. “We fight to the last minute, put everything we have on it, but he was an extremely premature baby”, says Francis. Death is also part of the routine. The death rate in a prenatal ICU runs around 15%.
Day 5
At 7:50 p.m., the results of the blood culture exam for Laís, the daughter of 20-year-old Ediane Leite Batista, arrive from the lab. Negative, as expected. The girl was born with a persistence of fetal circulation, but that is not a serious problem. Inside the womb, the child breathes and feeds through the umbilical cord. When she comes out, she begins to breathe through the nose and mouth. Laís didn’t make the switch from one stage to another and ended up suffering from cyanosis, which left her skin purple. In the incubator, she will have to learn how to breathe on her own.
Doctor Julio Cesar da Costa reads Lais’ medical chart and explains the situation of the daughter to the mother, who up to that moment seemed not to understand why the baby had that color. He gives the first orientations: “Still today there are mothers who think that children are born retarded, that they don’t hear or listen. But, in fact, they interact and in an ICU that is also true.”
In a different room, physiotherapist Claudio Souz Teixeira attends to little Jennifer, who was born premature, with pneumonia and pulmonary hypertension. He cleans the respiratory tube and massages the baby. Studies show that children who are massaged while in the incubator gain weight more rapidly and become more sensitive. “Ok mommy, now he is all yours.” Josefa Barbosa Moreira, 23, answers to herself. “Forever, my daughter, isn’t it?” According to the doctors, this was a very complicated case and she probably wouldn’t have survived outside a high risk maternity such as this. Josefa can’t believe what she is going through.
As other women, she was raised on beautiful stories about the wonders of pregnancy. But for the mothers in a prenatal ICU, reality seems cruel and unfair. “When she was born, Jennifer didn’t cry. I looked over the sheet and saw the doctors doing first aid. When I went up to see her, the psychologist told me she was the most critical baby in the maternity ward, and that I had to be strong. That is all I ask God, to be strong”, reveals the mother.
“Every time the doctors went up they only had bad news to give me.” After ten days, she begins to see progress in Jennifer, but still blames the complications during the delivery for her daughter’s condition. She feels that her suffering could have been avoided. She looks suspiciously at the doctors and nurses who will treat her daughter. “I think I am breathing with her, restless and afraid.”
Day 6
Social care officer Lucia Massae Moriya assists the mothers in the baby ward. The maternity offers transportation tickets and meals for the families so that they can stay longer at the hospital, be it to breastfeed or to practice the kangaroo method, in which the children are held at the mother’s breast to keep them warm. Lucia is worried about the fate of two little girls. They were abandoned and are waiting for adoption. One has a congenital defect and will be hard to find a home for her. The other is normal, but the mother gave up on her. “Sometimes I feel revolted. After so much effort to keep them alive, you can’t just leave them.”
Responsible for the maternity, director-general José Carlos Riechelmann cites the difficulties that he faces. Since the beginning of the year, the neighboring state hospital deactivated its maternity and stopped doing a hundred deliveries a month. The demand passed on to the municipal maternity. Part of this year’s budget that was supposed to got to the prenatal unit will have to be used to make up for the service increase.
Another concern: even if the money was available, there wouldn’t be enough professionals for that, especially nurse assistants. “In spite of the short blanket, no one is freezing to death at night. We managed to keep high quality standards thanks to the training of our employees and because of our culture of good service”, says Riechelmann.
At 6:35 p.m., surgeon Luiz Gonzaga da Silveira Arruda Junior arrives. He was called on emergency to operate Gustave, a premature baby of 27 weeks and 970 grams. Since he will have to stay in the ICU for a few more days, the baby will need a flebotomy, which is the exchange of the umbilical catheter for another, going through his head. Because he is premature, the doctor had difficulties in passing the little tube through his vein. “In premature babies you need a lot of calm and patience, and we can never lose track of the evolution of the clinical condition”, he explains later. They were on the operating table for 55 minutes. The mother, Irene de Souza Nascimento, 39, had already left.
Day 7
It is a mistake to imagine that the premature babies don’t need breast milk. Studies indicate that the milk of these mothers contains much more fat, proteins with immunological functions and vitamins than that from women who gave birth at the right time. That is why the prenatal unit maintains a milk bank. Nutritionist Elisa Ferreira da Cruz tries to motivate each mother to collect the milk to be used in feeding the child. “They feel useless, but when they find out that 1 milliliter already helps, they change their attitude completely.”
Psychologist Ana Lúcia Pinto Coelho, who also tries to motivate parents, knows that is not always easy to convince them to interact with the children in the incubators. “The ICU is a completely hostile environment, everything is very frightening.” To her, one of the biggest challenges is to keep in touch with parents and their children. But the most important, explains Ana Lúcia, is that they never stop looking for professional support.
To Dr. Cláudia Tanuri, the battle for life has gotten a lot better in a prenatal unit. A long time ago, there were no adequate medicines. After that, medicine became dependent on technology and, a decade ago, doctors were only worried about the survival of the child. Today, the goal is to humanize the treatment of the mother and the baby. And even in the gravest cases, you never give up. “Sometimes we ask ourselves when is it time to end the suffering. There is no answer to that. We will always try our best.”
Nurse assistant Celusa Cândida da Cruz, 53, summarizes with great accuracy why it is worth to fight: “I believe that babies that are premature or that are born with problems are special to the parents, who will know when to give love, caring and safety. And they will be doubly rewarded when they grow up.” Celusa is the adoptive mother of Ana Paula da Cruz, a teenage girl that 22 years ago was born prematurely, with 1,200 grams, and few believed she would survive. As a little sign reads at the entrance of the maternity: “You need to love as if there was no tomorrow.”
Three weeks later
On Friday, the 27th, Rosinete Alves da Silva was discharged from the hospital, after two weeks in the prenatal unit of the Maternity-School of Vila Nova Cachoeirinha. With pride, she took little Alan home, where his young sister Aline was waiting for him. Strong and healthy, the baby still has a long way ahead, as all the other children who leave the hospital. During the next two years, he will have to stop by the ambulatory every month for a health and weight checkup.
Before her, João Arlindo, son of Maria Pereira de Miranda, had already gone home. The two other children who were born on the 15th were transferred to the semi-intensive unit and then discharged. The same went for Eliana Souza Menezes and Claudia Pereira de Lima, mothers of Diego and Yasmin. On Thursday, the 26th, it was the turn of Ediane Leite Batista, mother of Laís, to go home.
Other babies still have a long way ahead. Carlos Henrique, Jennifer and Gustavo are still hospitalized in the unit. Fabiana Mello still hasn’t gotten used to see little Carlos Henrique suffer any procedures. “At those moments, it seems my head goes out and I don’t see anything anymore.” Irene de Souza Nascimento, mother of Gustavo, is full of hope: “Sir, you have to take his picture now so that I can show him in the future how tiny he was.”
As for the two little girls waiting for adoption, one of them got a new family on the 1st. The other is still waiting to be adopted, or for a decision from the Infancy and Adolescence Bureau about her destiny.