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María’s Story: Having a House but Not a Home

April 30th, 2022  | HIElights of Hope

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Name: María Acuña

Location: Montevido, Uruguay

Child’s Birth Year: 2017

Keywords: Loss Parent, Navigating Grief, Inadequate Health Care, Advocacy Work

Cuando llegue el momento nos reconoceremos.

Te amamos. Siempre. 

-Papá y mamá

María lives in Montevideo, Uruguay, with her husband, Vittorio. As a little girl, María had always dreamed of becoming an architect, and, for a while, she was living her dream. But, in 2017, when her first child, Francisco, suffered from severe brain damage due to HIE at birth, she left the world of architecture to care for him full time. At seventeen months old, Francisco passed away, and, since his death, María has not yet felt that passion to do the work she used to love. María’s story is one of absence—the absence of support from people she used to call friends, of basic treatments or resources for Francisco, of a sense of “home” and belonging, and of Francisco physically not being here anymore. Yet, despite all this absence, María’s story is one of presence—the presence of a newfound desire within her to to ensure that no child with a disability, nor any parent, suffers abandonment and discrimination by the healthcare system and society as a whole.

María’s pregnancy with Francisco was typical, void of any medical complications whatsoever. Doctors induced labor one week past her due date, and, due to the umbilical cord being wrapped around his neck twice, Francisco was born with no oxygen flow. Because he was not monitored at all during the delivery process, no one could tell how long he had been deprived of oxygen. The only certainty was that Francisco’s injuries were alarmingly severe, leading to a stay in the intensive care unit for over a month.

After the HIE event, Francisco suffered from seizures, and, until the second month of his life, he couldn’t blink normally—he just always looked asleep. He could not see, hear, eat, or really move at all. He did physical therapy to help with muscular tone, but nothing seemed to help ease his pain or help him meet milestones. Francisco never made a sound, and it took María over a year to fully understand that her son was never going to cry. For her, Francisco’s silence was the hardest part—she wished so badly that she could read his mind and know how he was feeling. In a paradoxical sense, while most mothers would do anything to get their child to stop crying, María so badly yearned to hear her baby wailing, to bestow upon him the freedom to communicate his emotions.

Throughout Francisco’s life, María often felt utterly alone. It seemed like everyone—friends, family, and doctors—was abandoning her and her child. She will never forget the ENT she took Francisco to, who spoke to her so bluntly, without even a trace of compassion: “Stop wasting your energy to try to get him better. Get yourself another baby and move on.” Was she supposed to just abandon her son, like everyone had abandoned her? Was Francisco’s life really worth nothing? How could anyone, let alone a physician, speak to a mother like this? Moreover, every vaccination appointment, tube change, or blood draw put María in a bind, since, dozens of times, she was told, “I can’t do it. I don’t have the experience to deal with a baby like him.” Finding a professional with the skill or empathy to treat a child with HIE in her country was not easy, and María felt utterly helpless. How could she advocate for her son when very few were prepared to treat rare cases like Francisco’s or would even take the time to hear what she was saying? One of the people who treated María with humanity was Francisco’s physiatrist (affiliated with the Fundación Teletón), who served as his main doctor and coordinated his care plan with the neurologist, the gastroenterologist, and other “specialists” on his team. The physiatrist checked in frequently to make sure both María and Francisco were okay. At a time when phone calls from friends were essentially nonexistent, these check-ins made a world of difference.

Because Francisco could not eat on his own, he had an NG-tube, and when he was six months old, he transitioned to a G-tube. However, the hospital didn’t provide María with any formula to put in his feeding tubes. In Uruguay, she couldn’t even find a decent high-power blender that enabled her to make the formula herself. To obtain the commercial-quality blender to liquefy Francisco’s food, she would need to import it from Argentina or Chile for upwards of $1,000, which wasn’t within her immediate budget. Instead, María was forced to spend hours on end puréeing soft foods, such as potatoes, pumpkin, and carrots by hand.

Because Francisco couldn’t move or exercise at all, María wanted to make sure she was feeding him healthy nutrients. However, there was not even a nutrition specialist equipped to offer her advice, so, again, she was forced to do research about nutrition on her own. She tried to understand all that she could from the literature, but most articles weren’t available in Spanish, making it difficult for her to understand.

As a whole, the country of Uruguay is proud of its healthcare system and the fact that everyone has free access to services. While nationwide health coverage is great, healthcare workers trained to provide care for specific conditions, such as HIE, are hard to come by. Because specialists are so few and far between, people sometimes must wait months for an appointment. María had to fight hard to get Francisco into physical therapy even once a month, and she often wonders how his life could have turned out differently had there been better resources available. The system continues to fail children like Francisco, and that was unbelievably difficult for María to witness firsthand.

In spite of all these challenges and barriers to care, María continued to be a constant force of love for Francisco. She hated when family members told her not to worry because Francisco would soon start eating on his own. She knew he would not, and to have false hope was more painful than to have the truth. She hated when the physical therapist tried to make her feel better by saying that Francisco was moving his head to follow their voices. María was his mother, the one living with him—she knew he couldn’t see. However, even though she didn’t have that hope that Francisco would meet his milestones, she maintained a different kind of hope. For her, hope was making sure she loved him dearly and did all she could to help him live his best life, no matter how many people told her to give up on him. When Francisco was alive, she and Vittoria vowed to continue fighting as long as their son was fighting. They did their best to enjoy the moments they had with Francisco, as they did not know which day with him would be their last.

While the friends María and Vittorio had grown up with completely disappeared after Francisco was born, María found hope from various Facebook support groups she was able to join. Through Hope for HIE, María connected with mothers from all over the world who truly understood the unique challenges she experienced on her journey. For instance, María met an HIE mom from the Philippines, who, like her, did not have access to many of the resources found in countries such as the United States. They cried together, laughed together, and gave each other advice on how to repurpose materials, so they could make the most of the resources they did have.

In addition, María began following the Facebook pages of many HIE children with diagnoses similar to Francisco’s. One mother posted about her son, who was deaf-blind, and it was through her that María learned tactile sign language in an attempt to communicate with Francisco. In another Facebook group called “Therapeutic Babywearing,” María posted a photo of Francisco being carried on the beach by his father. She was immediately contacted by two Uruguayan mothers of children with cerebral palsy. Thanks to them, she was able to join a small, but passionate, Uruguay-based group of parents of children with complex disabilities. While being part of pages like Hope for HIE was helpful, the fact that the page was run in English was a barrier to her, and she often found it difficult to relate to parents who had access to a breadth of resources. Thus, finding this community of Spanish-speaking people in her own country, who validated her struggles, as well as understood some of her unique stressors, was a lifesaver.

Francisco passed away on October 14, 2018. As María held him in her arms, she did not ask him to stay, but she asked him to find the comfort he was not able to receive during his seventeen months on Earth. The grief she felt was as wide and deep as her love for him, but, despite the pain, she never once regretted having Francisco—being able to experience that kind of love was magical. She would have given him her own heart if she could.

After Francisco’s death, María never received the typical home-cooked meals or messages of support. Only one of her friends visited her a few days after his death, and María will never forget her misguided attempt at empathy: “I know how difficult this is for you. I miss my boyfriend’s children terribly during the days of the week where they stay at their birth mother’s house.” María never saw her again.

More than anything, she just needed someone to hold space for her, but she was exhausted from hearing the same phrases from family over and over again, whether it was “Everything happens for a reason” or “You will get another one.” Hearing this broke her already broken heart, and María just felt like screaming out, “I don’t want another! I want Francisco,” or “Please enlighten me on what could possibly be the reason behind this insurmountable pain.” María never expected, or needed, to be understood. All she needed was to be held and to be heard. All she needed was someone who was willing to listen to her talk about Francisco’s life and see pictures of her beautiful, baby boy. For María, posting pictures of memorable moments, in remembrance of Francisco, to the Hope for HIE Loss page, and receiving love and support from the community was everything.

Now, although María still has not been able to get herself to once again enter the architecture world, she is giving herself grace, realizing it’s okay if her grieving process takes a little longer than expected. Grief is complicated and nonlinear. There are days when María struggles to get out of bed, thinking about how her life could have possibly turned out like this. But, now, there are more and more days when she is able to let those good moments with Francisco resonate. She is hopeful that, one day, she’ll be able to find her passion and purpose once more, even if it may not be through architecture.

María knows how utterly isolated she felt in her journey and how the difficulties finding resources, such as blenders, therapy appointments, and specialists, only exacerbated her pain. She truly hopes that, in the future, no parent will ever have to go through what she went through. She hopes that in the future, the efforts made by parents in Uruguay to share their stories with healthcare providers, push for more pamphlets to be translated to Spanish, and start fundraising campaigns to donate blenders to families with tube-fed children will catalyze meaningful reform. She is hopeful that, one day, she will be able to smile on Mother’s Day, as she remembers how beautifully deep her connection to Francisco was. And she is hopeful that, one day, her house will, once again, feel like home.