For those parents who choose to carry the baby to term and see what happens, it’s about asking how to optimize the outcomes. “We still know it is a life-limiting disease. Nothing has changed about the genetics of the disease. But some kids will live, some will leave the ICU, we don’t know which way it is going to go.”
Neonatalogist Dr. Natasha Henner describes how a subset of parents of children with Trisomy 13 and 18 are pushing — it is creating data that some kids survive beyond a year. And those who are surviving are surviving better than we thought they would. Which leads to the question of “How do you define a good outcome?” and does the parent have a different definition of a good outcome than we previously did. And how that influences the care now being provided to kids diagnosed with Trisomy 13 and 18.
A couple’s advice to fellow parents: “Don’t do anything you’re not comfortable with; It’s OK to say to the doctor, I don’t know, can you please give me a list of things to consider.’
Sarita and Kareem Edwards describe the foundation they started to support families and children living with Rare disease in their community. https://theewefoundation.org/programs/
Parents of a child with Trisomy-18 talk about why they did not find the Trisomy-18 group helpful and encourage parents to find people, in a group or otherwise, that helps them feel understood and supported, not judged or marginalized.
Parents of a 6-year-old with Trisomy 18 talk about his older siblings’ adjustment, how they keep an eye on the siblings, and the siblings’ protectiveness.
Parents of a boy with Trisomy 18 describe his team of medical champions: the pediatrician, the plastic surgeon from his cleft palette who connected them with so many other specialists, the nephrologist, rehab specialists. The champions are those who connect them with other champions who really care and work it out for them. “They are ready to fight for him … they help us know things that we wouldn’t know, you know, watch for things that we wouldn’t know to look for.”
Black parents of a boy with Trisomy 18 reflect on their experience from his in-utero diagnosis onwards and the possibility that their race impacted the care and conversations the medical system was having with them. Mom felt that they thought she didn’t understand the prognosis, that she was ignorant. “I find myself having to show our education and who we are . . . I shouldn’t have to wear a college degree on my shoulder. I shouldn’t have to change the way I speak in order for you to listen to me. You shouldn’t have to google us to listen to me.” They also note their perception/vibe that the clinicians don’t assume the father is actually the father. They eventually found the right team to be their son’s champions and pave the way so that race and the diagnosis are less of a factor, ‘opening the door for us and making it easier for us to walk in.’
“If you’re advocating, you’re not complaining, you’re fighting for a better conversation. . . We’re not going to just make a decision for Elijah’s health because you the physician feel like that’s what we need to do. I need more than that; we need more conversation than that.”
Parents of a boy with Trisomy 18 recount their evolution as their son’s advocate in the face of a medical system that does not expect their son to live. “I have no reservations or hesitations about finding another physician. My entire outlook on being a patient has changed. . . We give new physicians the chance to be champions for Elijah. I go in ready, because we have been shot down so many times when it comes to providing care for him, that we’re just ready for whatever they bring.” They give an example of a G-Tube.