Therapies Help Kids Defy Expectations
Category: Client Story
March 11, 2024
Pediatric Therapy for Children with Complex Medical Needs
Even in the hardest times, our pediatric therapists give everything, no matter what the future may hold. Gloria was experiencing a normal, healthy pregnancy: she was having identical twin girls, with a 9-year-old son at home. At her 18-week check-up, they got the heart-wrenching news that one of the twins, Olivia, had passed away. The other twin, Sophia, had suffered a stroke. The rest of her pregnancy was filled with unknowns and grief.
No one wants to hear a scary diagnosis, especially when it comes to their kids. Parents need help to understand what is happening and how they can move forward.
Accepting Every Life
Sophia was born on Christmas day 2022. Doctors said that Gloria and her husband could baptize her and say goodbye, but that her odds of survival were minimal. They were told that she had anencephaly— which means she was born with no brain—along with other congenital defects. Anencephaly is one of the most serious diagnoses, with more than 60% of babies surviving less than 24 hours after birth.
“She looked ill, with a squished head, crooked legs, and with the doctor saying she was born without a brain. I didn't question it and accepted that she would pass away shortly.
The family just wanted to be together for whatever time they had left. Gloria remembers seeing her daughter suckle, and so, although she was on a feeding tube, it was important for her to breastfeed her. They were discharged to the Christopher House, a hospice facility nearby. Doctors confirmed that there was nothing to be done. After a week, they decided to move to in-home hospice care through Dell Children’s Medical Center.
“I’ve accepted she’s going to die. We just want peace with her and to be in our home. We don’t want any visitors,” Gloria recalls telling her hospice nurse.
But her nurse told her not to give up hope. Sophia did have parts of her brain, although it had been damaged by the in-utero stroke. This new information completely changed things for their family. They reconnected with the neurologist, who said that yes, she has parts of her brain, but her quality of life will be bad. Regardless, Gloria thought whether it’s one month or 5 years of life, I want Sophia to have the best care possible and opportunities for a quality life.
Finding a Path Forward
Gloria connected with a pediatrician specialized in comprehensive care for medically complex cases, and Sophia had her first doctor visit. It was during this visit that Gloria got connected to Any Baby Can’s Early Childhood Intervention (ECI) services.
From there, “things just started flowing,” as Gloria says. ECI staff started coming to their house to do physical therapy, feeding therapy and so much more. No matter what the future held, Any Baby Can was by their side, taking care of Sophia and her whole family.
“For the first time, we felt like Sophia’s life was valued. No one had hope in her. Not even us, unfortunately. But here we were, on hospice care, and Any Baby Can was still willing to give her therapies,” says Gloria.
A Life That’s Different
Gloria says that you hear about wheelchair access and special education, you know about kids receiving treatments and medical devices, but you don’t notice these things because it isn’t your life. But now, any decision they make revolves around Sophia’s special needs. They plan to sell their “forever home” soon since every door access has stairs.
But having a resource like Any Baby Can has made things possible that she never could imagine for Sophia.
“They’re allowing her to live her life. Sophia had her first birthday! She’s out of hospice. Her legs have been corrected, although we’re waiting on surgery for her feet. She holds her head up and eats purees,” tells Gloria.
The last 15 months of ECI services haven’t been easy, but with therapists that come to her home and work around her schedule, Gloria says it has been convenient and rewarding.
“This is it. This is going to be the game changer for Sophia thriving. It felt like I had people on my team. They gave me the will to catapult and keep advocating for Sophia,” says Gloria.
Gloria got the tools she needed to practice skills with Sophia during their everyday activities, and to overcome challenges when they arose.
Hope for All Kids
When parents are facing a mountain that seems too steep and too high, it helps to know that you have someone who believes in you, and in your child. Any Baby Can staff treat your family like part of our own. We wouldn’t lose hope with our own children and won’t with yours either. It’s a partnership, a relationship, that builds with regular visits over the course of years. There is no judgement, no exclusion; just practical, much-needed support for parents facing difficulties with their kids.
Gloria’s highlight of the week is when she was able to serve her 10-year-old son and Sophia the same star-shaped noodle soup. We celebrate the little things that bring us together, give us hope, and remind us that all kids deserve to live to their full potential.
“Whatever she’s able to do, I’m here for it. I will advocate for her. I am not going to give up. I will do everything I can to support Sophia, and accept everything she is capable of doing,” says Gloria.
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