An In-Utero DCC Diagnosis Journey for Mother of Six, Claire Hallowell
When Maryland-based mom Claire Hallowell learned she was pregnant with her sixth child, she expected a familiar journey. As a mother of five, she felt confident navigating pregnancy and preparing for a new baby. But during a routine scan meant to reveal her baby’s gender, something unexpected happened. The silence in the room signaled to Claire that something was wrong before anyone said a word. Instead of sharing the news she anticipated, the medical team stepped away. Soon after, Claire was referred to a high-risk specialist. That moment marked the discovery of her baby’s DCC diagnosis, and the beginning of a very different kind of pregnancy; one filled with uncertainty, questions, and difficult decisions.
At first, Claire felt confused. She had never encountered anything like this before and did not realize that scans could reveal neurological concerns. As the reality set in, confusion gave way to a mix of fear and overwhelm. Doctors could see that something was different, but they could not clearly define what her daughter’s future would look like. From that point forward, her pregnancy changed dramatically. She switched hospitals, changed care teams, and began weekly trips to specialists to monitor her baby’s development. Each visit brought close observation, especially of fluid levels in the brain. The routine was demanding, both emotionally and logistically, particularly while caring for five other children at home.
The emotional weight was just as significant. Claire recalls that much of the joy she had experienced in previous pregnancies was replaced with uncertainty. Doctors presented difficult questions, including whether she wanted to continue the pregnancy. Without clear answers about severity or long-term outcomes, Claire found herself navigating decisions without a clear roadmap. She recalls, “They kept saying, ‘Well we don’t know for sure that she’s not going to be able to do normal activities, but we also don’t know if she is.’”
Despite the uncertainty, Claire leaned into her instincts. Rather than making a decision based on fear, she chose to move forward one step at a time. She reframed her mindset, focusing on what she could control and allowing space for possibility. Over time, she began to find small moments of meaning within the experience. The frequent appointments, while stressful, also gave her something unexpected: more opportunities to see her baby. What once felt overwhelming slowly became a chance to bond.
She decided to take the pregnancy as it came, trusting that whatever challenges might arise could be faced when the time came. That shift helped her regain a sense of grounding. Alongside that mindset, Claire sought connection. She began looking for other families who had experienced similar diagnoses and found a supportive community. She connected with another mother who was pregnant at the same time with a similar diagnosis, and the two have continued to check in with each other over the years. Through these connections, Claire came to understand something that changed her perspective: DCC diagnoses often exist on a spectrum. Outcomes can vary widely, and no single prediction defines a child’s future. When her daughter Kayeloni was born, there were still many unknowns. But over the past four years, those unknowns have been replaced with growth, progress, and joy. Today, at age four, Kayeloni is thriving.
She received physical therapy early on to support her mobility, and with that support, she has made significant strides. She walks, plays, and attends preschool, where she eagerly shares detailed stories about her day. To many, her diagnosis is not immediately visible. Claire shares, “She’s doing all the things… you would have never even known.”
Watching her daughter grow has deepened Claire’s desire to support other families facing similar uncertainty. She hopes her story can offer reassurance to parents who are navigating an in-utero diagnosis. Her advice is rooted in her own experience: trust your instincts and make the best decision for your family. Simply stated, she shared: “Go with your gut and find your people.” She emphasizes the importance of connecting with others who understand the journey. Finding a community, whether through organizations like the NODCC, research participation in any variety of studies, or other families through Zoom or local gatherings, can make an overwhelming experience feel manageable.
Claire also encourages parents to explore available resources and not to hesitate in seeking support. Even small tools or interventions can make a meaningful difference in a child’s development and quality of life. This past year, Claire was approved through the NODCC’s Olam’s Piggybank Grant Program to a receive a weighted blanket that will help regulate Kayeloni’s comfort in difficult moments. Claire shared that initially, she was uncertain whether to apply for the grant, as the item did not necessarily seem like a “need”, but she is ultimately glad she did, because now Kayeloni will have a tool that will improve her quality of life. Claire encourages anyone on the fence about applying for an Olam’s Piggybank Grant item for their child, to submit the application, even if unsure. Click here to learn more about this grant program and its upcoming application window.
Looking back, Claire acknowledges that her pregnancy was filled with challenges she did not expect. The unknown was difficult, and the decisions were not easy. But within that uncertainty, she found the positive. She wisely shares, “Even in your scared moments, find joy in the little moments.” Today, those moments are part of everyday life: in Kayeloni’s interactions with her siblings, in stories Kayeloni tells after school, and in the rhythm of a busy household, Claire sees the beauty that grew from a season of uncertainty. In her free time, Claire enjoys spending time in the garden on her property, tending flowers, teaching her children, and bonding with them.
Claire’s journey is a reminder that an in-utero diagnosis may change the path, but it does not define the outcome. By seeking connections and trusting in oneself, families can move forward with hope, knowing there is joy to be found in whatever the future holds.
