The most common sensory stimuli external to the womb felt by most pregnant women around the world, for her, have never been experienced. The first hug, the act of breastfeeding, holding the child in her own arms, feeling hearts beating together in the warmth of her lap, as is common for women intuitively minutes after giving birth, were unknowns that turned into ghosts and that haunted her. throughout pregnancy. Today, on her first Mother's Day as a mother, Thainá da Silva Lourenço, 21, has a lot to celebrate. Almost eight years ago, a gunshot left her with tetraparesis and changed her life forever. 

The gunshot suffered by Thainá when she was 13 years old caused a spinal cord injury to the first thoracic vertebra, just below the neck, which left her without sensitivity and ordered from that point on. His survival is considered a miracle. She spent two months hospitalized, 15 of which in an Intensive Care Unit (ICU) and 22 intubated. “Her death certificate was filled out. Doctors didn't believe she would survive. One of them asked if I knew how to pray. He said I should hand it over to God, as the situation was very serious. At one point, she had a birth and death certificate. All that was missing was the doctor’s signature”, recalls Telma da Silva, Thainá’s mother. 

After the most critical period of hospitalization, Thainá began the rehabilitation process at the Anita Garibaldi Health Education and Research Center (Anita), one of the units of the Santos Dumont Institute (ISD), in Macaíba. A multidisciplinary team made up of neurofunctional physiotherapists, psychologists, urologists and neurologists provided support in relearning activities of daily living. At the beginning of 2021, the surprise: the pregnancy test came back positive. Thainá became the first pregnant disabled woman assisted by ISD and became a milestone for the institution.

“I had never cared for a patient with any type of disability. We had no idea how the uterus would contract, what the risks were of a cesarean section or a natural birth. It was a great and surprising learning experience”, says ISD physiotherapist preceptor Larissa Varella, a specialist in women's health, who accompanied Thainá during pregnancy and postpartum. The work developed by Larissa Varella and Heloísa Britto, also a physiotherapist preceptor, made it possible to strengthen the patient's trunk and upper limbs, making the dream of holding the baby come true, in addition to stimulating the correct functioning of intestinal and bladder functions.

According to Larissa Varella, Thainá's pregnancy involved even more risks, due to the spinal cord injury having affected the functioning of the body from the neck down, than the pregnancy of a woman without disabilities. “We also need to work on her postpartum physiotherapy. We had to do adaptation and training work so that she could hold the baby firmly, moving him safely to change diapers, breastfeed... And she did it. She takes care of her son with great care and independence. This is gratifying, as it was work that mobilized many professionals”, highlights Larissa Varella.

Thainá's pregnancy was considered peaceful by the team of specialists who accompanied her, the obstetrician gynecologists Thaíse Lopes and Reginaldo Freitas Jr. However, in the final stretch, gestational diabetes made the doctors' plans change and the cesarean birth was the solution to keep mother and child safe. Furthermore, the public health network in Rio Grande do Norte does not have the structure to carry out normal births as private as the one in Thainá. This absence raised an alarm.

“Carrying out Thainá’s prenatal care was challenging. After all, I had never provided prenatal care to a patient with the degree of spinal cord injury she has. At the same time, it was an opportunity for learning and professional growth. The work of Anita's multidisciplinary team was crucial to the success of the case. Today, seeing Thainá arrive at Anita with the baby on her lap, seeing her breastfeeding is a source of enormous gratitude. It’s a feeling of mission accomplished, really, of attention to the comprehensive care for women that we provide in our service”, reports Thaíse Lopes.  

Maternity

Ayllan, Thainá's son, was born full-term on October 14, 2021, after a cesarean section assisted by the gynecology and obstetrics team that accompanied her at ISD during pregnancy. This Mother's Day has a special flavor for her.

“It's a mix of emotions, because being a mother is not easy. But, at the same time, it's gratifying to know that there is a little person who is like our heart outside of us, to tell the truth. I'm very happy to have him, even with the day-to-day difficulties and I hope he grows up well, that he can be happy by my side and that he's proud of the mother he has. I hope he sees the effort I make and recognizes me one day”, declares Thainá. 

For Aylan's grandmother, who has five other grandchildren, this May 8th is a day of joy and gratitude. “It’s exciting to live this day. She is always with him and I am very happy having her and him with me. She has shown herself to be a very committed mother. My feeling is gratitude for everything we have experienced so far”, says Telma, Thainá’s mother. 

To welcome

In 2021, the Santos Dumont Institute began developing Perinatal Care for People with Disabilities (Acolher), a project designed by the general director, obstetrician gynecologist Reginaldo Freitas Jr.. The first patient treated by the team that makes up the Acolher Project was Thainá da Silva Lourenço.

“There are still many rights to be effectively guaranteed to people with disabilities. Equity in access to sexual and reproductive health services is among these rights that need to be guaranteed. This is one of the dimensions of inclusion that deserves greater visibility. The right to free exercise of sexuality must be universal and include people with disabilities”, declares Reginaldo Freitas Jr..

He also recalls that he told Thainá, from the first consultation at Acolher, that this is her right and there is no reason to reinforce ideas of guilt, shame or illness when discussing the autonomy of people with disabilities in the decision to get pregnant or not. 

“It is not about neglecting health care in situations in which pregnancy can put a woman's life at risk, but about offering space for dialogue, information, empowerment and protagonism for conscious choices. We know the challenges, how much we still need to learn and how we need to evolve, combating our prejudices, including ableism, but this cannot stop us from starting to do, from articulating this line of care in the health system. This process is absolutely interdisciplinary and interprofessional, we need the synergy of a lot of knowledge and practices and we are forming this team”, assures the general director of ISD.

His speech is reinforced by other professionals. “It is important to think about how neglected women with disabilities are. We need to talk about this, put this topic up for debate. Women with disabilities, depending on the disability, can become pregnant without major risks. A woman has the right to an independent life, to marriage, to choosing to be a mother”, argues Larissa Varella.

For physiotherapist Heloísa Britto, who carried out neurological rehabilitation, it is necessary to change collective thinking so that people with disabilities are effectively integrated into society. “We, who work with physical rehabilitation, recognize and value social participation. We rehabilitate an individual after an injury, for example, or enable an individual who has a congenital injury to have a possible social life. There is a newer expression called ableism, which is people's lack of recognition of their capabilities. People with disabilities have potential. Ableism is looking at them and thinking they are not capable. It's looking at a wheelchair user and judging him as a “poor thing”. It is necessary to look at these people and see in them autonomy, the ability to do things”, emphasizes the physiotherapist.

Trust

On behalf of the ISD professionals who served and are caring for Thainá and her son, Aylan, general director Reginaldo Freitas Jr. talks about the fear, but highlights the trust and commitment throughout her pregnancy and postpartum process. 

“Thainá trusted us, was our great partner and generously taught us about building a caring relationship that shared fears, goals, frustrations, joys and successes common to everyone involved. Yes, we were also very scared. The more we studied, the more uncertainties emerged. What we know is a drop in the ocean that we still don't know about. I couldn't sleep the two days leading up to her birth. I would get up to research evidence that would help us decide on the mode of delivery, type of anesthesia and medications, for example, but none of that compares to the joy of seeing her smiling at Ayllan and transformed into the woman-mother she is today. She is the one who has been our greatest teacher”, emphasizes Reginaldo Freitas Jr.

ISD is a reference in high-risk pregnancy care for the residents of Macaíba and throughout Rio Grande do Norte for pregnant women with syphilis, toxoplasmosis, rubella, cytomegalovirus, herpes, parvovirus B19 and Zika virus.