Aline Arruda: Um elo entre Brasil e Austrália no acolhimento de famílias com prematuros

Minha história começa há muitos anos atrás (não tantos), mas vamos começar em 2012 quando chegamos na Austrália eu e meu marido e quatro malas e viemos parar aqui na nossa cidade amada Perth onde moramos até hoje. Construímos nossa vida, passo a passo, suor, lágrimas, conquistas.  No Brasil era advogada e consultora ambiental. Na austrália, me tornei educadora infantil, uma profissão que eu amo e que me permite passar mais tempo com meus filhos. 

Em 2015, depois de muito conversar sentimos que estávamos prontos para aumentar a família. Engravidei e sofri um aborto espontâneo devido a uma gravidez tubária. Voltamos a tentar mais tarde naquele ano e em julho engravidei da Amanda que nasceu em março de 2016. A gravidez dela foi tranquila, contratei uma Doula que nos acompanhou e foi fundamental no parto e pós-parto. Amanda nasceu de 40 semanas + 1 de um parto natural ao som de meus mantras favoritos. Meu marido a pegou e me deu nos braços onde ela permaneceu pela próxima hora.

Quando engravidamos de novo em 2017, eu tinha certo que mal teria tempo de chegar no hospital para parto. Como o primeiro foi rápido, tinha certeza que o segundo seria assim também. Contratamos uma Doula de novo e tudo estava indo normal até o exame das 20 semanas quando nosso menino foi diagnosticado com um tumor grande, chamado SCT por se localizar na região do cóccix. A minha obstetra querida nos encaminhou para a Prof Jan Dickensen, a melhor médica do nosso Estado, uma referência na Austrália em caso de anormalidades no feto. Aqui vale uma ressalva sobre o sistema de saúde na Austrália. Os casos de gravidez de risco ou problemas no bebê vão obrigatoriamente para os hospitais públicos, pois os melhores profissionais estão lá. 

Assim seguimos a gravidez, com acompanhamento quinzenal, depois semanal e no final da gestação, duas vezes na semana. Com 24 semanas gestacionais, soubemos que ele seria prematuro e o plano era mantê-lo no útero enquanto desse. Com 29 semanas a situação complicou e eu fui levada as pressas para uma cesárea clássica de emergência e com 29 semanas mais 4 dias, meu filho, Daniel nasceu com Apgar 1 no primeiro minuto de vida. Consegui vê-lo muito rapidamente na incubadora, entubado e já cheio de fios e cabos e precisando de um milagre para sobreviver, como os médicos disseram. Ele precisou de uma cirurgia com 3 horas de vida que quase o levou de nós, mas ele resistiu e ai começamos o próximo capítulo da luta: UTI neo Natal (NICU) onde Daniel permaneceu por 12 Embarcamos então de cabeça na prematuridade, com um bebê prematuro, com falência nos rins por conta do trauma do nascimento, com possíveis sequelas neurológicas e com todas as particularidades de um nascimento prematuro de emergência. 

As primeiras duas semanas foram muito tensas e são um borrão na minha memória. Primeira semana eu ainda estava me recuperando da cirurgia, podia ficar muito pouco com ele, mas assim que tive alta, saia de casa as 8 da manhã com meu marido e filha, deixávamos ela na escola e eu passava o dia com o Dani até as 4 da tarde quando retornava para pegar minha filha na escola. 

Nos primeiros dias de UTI, Daniel precisava fazer xixi para a equipe médica verificar se os rins estavam funcionando. Ele necessitou ficar no ventilador por 4 semanas e precisou de ajuda para respirar até janeiro desse ano quando saiu 100% do oxigênio. Eu peguei meu filho no colo a primeira vez com 20 dias de vida. Ele pegou o peito com um mês. Dei o seu primeiro banho com quase dois meses de vida. 

Diante de tantos altos e baixos, típicos de uma UTI Neonatal, fomos levando cada dia de uma vez, torcendo e comemorando as pequenas vitórias. Porém, jamais vou negar o quanto assustador foi tudo. Do dia que descobrimos o tumor até o dia que ele dormiu comigo no quarto ainda lá no hospital pela primeira vez, foram meses e meses sem pregar o olho, usando todo recurso da fé, uma aceitação pelo desafio e um amor que transborda o mundo. 

Porém, aos poucos, nosso pequeno foi saindo do risco e percebemos isso pela quantidade de enfermeira que tinha com ele. Nas primeiras semanas era uma só com ele 24horas. Depois uma enfermeira para dois bebês. E depois uma para quatro em uma outra sala. E depois uma para cinco não berçário, quase na saída do hospital. 

Foram 12 semanas, intensas, que me mudaram para sempre e me fez ver um lado lindo da vida: a beleza das pequenas coisas. E muito mais, o carinho das pessoas, como fomos cuidados pelos nossos amigos que faziam comida para nós, o profissionalismo dos médicos e enfermeiras e todo apoio que tivemos da psicóloga, apoio pastoral, assistente social, parteiras e especialistas em amamentação e saúde da mulher. Tudo público, sem gastarmos um centavo. E a Teresa Ruas que foi maravilhosa, atenciosa e não sei o que teríamos sido de nós sem ela nesse período tão delicado de nossas vidas. Nossa relação começou assim: fomos acolhidos por Teresa Ruas e hoje estamos juntas para conseguirmos acolher mais e mais experiências com a prematuridade. 

Hoje, o Dani está em casa, quase completando um ano. Ele é um menino muito feliz, vive de bom humor e de bem com a vida. É apaixonado pela sua irmã, Amanda e ela por ele. Ele respira sozinho, está sentando e ficando de pé. Comendo sólidos e dorme muito bem. É uma criança forte, um exemplo e já passou nessa vida mais que muito “marmanjo”. E está aqui, abençoando nossa família e sentimos uma gratidão imensa por ele estar aqui conosco em família. 

Um grande abraço, Aline Arruda, parceira dessa equipe e responsável pelas traduções em inglês. Nossa relação entre Austrália e Brasil está apenas começando…. que possamos acolher muitos pais de prematuros em vários lugares desse mundo. Os textos em inglês serão fundamentais para esse passo! 

Foto: Arquivo Pessoal. Proibida a Reprodução.

Aline Arruda: a link between Brazil and Australia in the foster care of families with premature infants.

My story began many years ago (not that many!), but let’s start in 2012 when we first arrived in Australia, me, my husband and four suitcases, and we came to our beloved city of Perth, where we live until today. We built our life, step by step with sweat, tears and achievements. In Brazil I was an attorney and an environmental consultant. In Australia I became a child educator, a profession I learned to love, which allows me to spend more time with my children.

By 2015, after much talk between myself and my husband, we felt we were ready to increase our family. I got pregnant and had a miscarriage due to an ectopic pregnancy. We tried again a few months later in that same year and, in July, I got pregnant with Amanda, who was born on March 2016. Her pregnancy was easy. I hired a Doula who accompanied us through the whole pregnancy and was instrumental in both childbirth and postpartum. Amanda was born 40 weeks + 1 from a natural birth to the sound of my favorite mantras. My husband picked her up as soon as she was born, gave her to me and I held her in my arms, where she remained for the next hour. My husband even cut her umbilical cord.

When we became pregnant again in 2017, I was certain I would barely have time to get to the hospital for delivery. Since the first labour was so fast, we were sure the second would be even faster. We hired a doula again and everything was going according to plan until the 20-week scan when our boy was diagnosed with a large tumour called SCT (Sacrococcygeal Teratoma), located in the region of his coccyx. My obstetrician referred us to Prof Jan Dickensen, the best doctor in the state when it comes to risk pregnancies. She is a reference in not only in Australia in case of foetal abnormalities. Here’s one caveat about the health system in Australia. Risk pregnancies or problems with the baby will compulsorily go to public hospitals as the best professionals (University teachers and researchers) and infrastructure are there.

We followed the pregnancy with biweekly follow-ups. The follow-ups then became weekly and at the end of gestation, twice a week. With 24 gestational weeks, we knew that he would be born premature. The plan was to keep him in the womb as much as possible, so he could get stronger and develop as much as possible. At 29 weeks the situation got even more complicated and I was rushed to a classic emergency cesarean and, at 29 weeks plus 4 days, my son, Daniel was born with an Apgar 1 in the first minute of life which raised to only 3 after five minutes. I was able to see him very quickly in the incubator, tubed and already full of wires and cables and needing a miracle to survive, as the doctors said. He underwent an emergency surgery that almost took him from us only 3-hours after his birth, but he resisted, and we then started the next chapter of the fight: Neonatal Intensive Care Unit (NICU), where Daniel stayed for 12 long weeks.

We then embarked on this journey with a premature baby, with acute kidney failure due to the birth trauma and too many blood transfusions, with potential neurological sequelae and with all the peculiarities of a premature birth (underdeveloped lungs, respirator, etc.).

The first two weeks were very tense and a blur in my memory. In the first week I was still recovering from the surgery and I could spend very little time with him – it was even more complicated as he was in one hospital (the children’s hospital where he was operated) and I was in another (where he was born, before being transferred for the surgery) – I had to be driven by my husband every day. But as soon as I was discharged, I left home at 8am with my husband and daughter, we would leave her at school and I would spend the day with Dani until 4 o’clock, when I then went home to pick up my daughter from school and spend the night.

In the early days of NICU, Daniel was not peeing, and the medical team was concerned if his kidneys were working. He needed to stay on the ventilator for 4 weeks as he could not breathe by himself in the beginning. Even after he got rid of the ventilator, he still needed help breathing until January 2019 (at around 9 months), when he was released from the home oxygen. I held my son for the first time only 20 days after 20 he was born, and he was still connected to various machines and IVs. He breastfed for the first time after a month. I gave him his first bath with almost two months of life. All things I was able to do with my daughter within the first hours of her life.

Faced with so many ups and downs, typical of a NICU, we were taking each day at a time, cheering and celebrating the small victories, such as the first time he peed. But I will never deny how scary everything was. From the day we discovered the tumour until the day he slept in the same room as me in the hospital for the first time, it was months and months without shutting my eyes, using every bit of resource, faith and acceptance for the challenge ahead of me. And a love that overflowed the world.

But with each tiny step, our little one was getting out of danger and we realised this by the number of nurses he had with him in the hospital ward. In the first few weeks of his life, there was a dedicated nurse just for himself, 24 hours per day. Then he was ‘upgraded’ to have one nurse for every two babies. Then one for every four babies. And then one for every five, when we went to the nursery, almost out of the hospital.

It was 12 intense weeks that changed me forever and made me see a beautiful side of life: the beauty of small things. The caring of the people, how we were taken care by our friends who made us food, the professionalism of the doctors and nurses and all the support we had from the psychologist, pastoral care, social workers, midwives and specialists in breastfeeding and women’s health. And all this care was public, we didn’t spend a dime. And to Teresa Ruas, who was wonderful, attentive and I do not know what it would have been like without her in this delicate period of our lives. Our relationship began like this: we were welcomed by Teresa Ruas and today we are together to be able to welcome more and more experiences with prematurity.

Today, Dani is at home, almost completing a year. He is a very happy boy, always on good mood (unless he is hungry, of course) and happy with life. He is in love with his sister, Amanda, and she is in love with him as well. He breathes by himself without any oxygen support, he is sitting and standing. He is eating solids and sleeps very well. He is a strong child, an example and has already been through what a lot of grown-ups haven’t. And he is here, blessing our family, and we are grateful that he is here with us as a family.

A big hug, Aline Arruda, partner of this team and responsible for the English translations. Our relationship between Australia and Brazil is just beginning …. that we can accommodate many parents of premature babies in various parts of the world. The texts in English will be fundamental to this step!

Aline!

Photo: personal file. Reproduction prohibited


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