Ward family

Bennett Ward, son of PVJH Spanish teacher Mallorie Ward, was born with Trisomy 18. But Ward’s remarkable journey continues to impress his doctors and give his family hope for the future.

Families do not envision their newborn’s first year being spent in and out of hospitals. But that is reality for so many families each year–and it was a reality for Pleasant Valley’s Ward family when their son Bennett was born with Trisomy 18.

Trisomy 18, or Edward’s Syndrome, affects one in every 5,000 live births and even more during pregnancy. The condition is usually fatal before birth. Trisomy 18 gets its name quite literally– from an extra copy of chromosome 18, causing abnormalities in development. 

The most common side effects are low birth weight, abnormally shaped head, clenched fists and other defects within the body. Most babies with Trisomy 18 pass away before birth or within their first month of life; only 5 to 10% of children live past their first year and usually have severe medical issues.  

Oftentimes conditions like this can feel distant or insignificant if one has never been personally affected by it. March is Trisomy 18 awareness month, and the goal is to teach the community about the realities of it and how to be more compassionate for those who suffer, often silently, from the condition. It is important to show support and love to those who need it during the difficult times that arise when facing Trisomy 18. 

There is a family within the PV community who is currently being affected by Trisomy 18. Eighth grade Spanish teacher Mallorie Ward’s son, Bennett, was diagnosed with Trisomy 18 during her pregnancy. Doctors told Ward and her husband the likelihood of Bennett surviving pregnancy or any time after pregnancy was very low. “What I realized though, and connecting with other parents, that’s not really the case. It’s if they have a lot of severe things going on, then yes it’s hard for them to survive long, but once they are given the medical care they need… they can live a lot longer lives,” Ward said. 

Within Bennett’s first year, the Ward family had to make very difficult decisions regarding his health by constantly considering the possible consequences and outcomes regarding his quality of life. “We always weighed, is it going to benefit his life if we do this, or is it just something with too many risks for it,” Ward explained. He ended up having a variety of interventions such as an abdominal, tethered cord and jaw/ tonsil surgery which were, fortunately, all successful. 

Since his first year in the hospital, Bennett has had two other surgeries but has also gone two years without being hospitalized for an illness. For those with Trisomy 18, common illnesses can be extremely scary and even fatal, making COVID-19 a major concern for the Ward family. The illness itself has been very detrimental for the family, but at the same time, everyone has taken extreme precautions to be safe and sanitary around Bennett, causing his overall health to be better than ever. Only within the last few weeks was Bennett hospitalized for an illness, and fortunately, he made a full recovery. 

Bennett still has monthly visits at the Iowa City Children’s Hospital where he sees over 15 specialists. He is fed by g-tube and has occupational and physical therapists who come to their home and virtual meetings for vision and hearing. The family also has two at-home nurses who switch off daily so Ward and her husband can continue to teach and pursue their passions. 

Ward shared more of her experience, explaining that the hardest part of their journey has been the uncertainty of the future. “We all never know what’s going to happen the next day or what’s coming, but for us, it’s right there in front of us constantly,” Ward said. They have been tasked with the unthinkable reality that one illness or surgery could be the one that is too much for Bennett, and yet, somehow, the Ward family has found light within the darkness. Ward has found an appreciation and compassion for others by now understanding that there are battles that other families face without ever being aware of. 

Even more so, Bennett has been an absolute light in their lives. Despite the doubts of doctors and others around them saying it would be hard on their family and marriage, and that children with Trisomy 18 are a lot of work or that the trauma would be too much, they have found so much joy in their son. 

“I’ve never known such a pure love and joy before. His love is unconditional. He doesn’t care that he’s had hard times and hard days. He’s still super happy. Every day he’s happy and laughing and he’s just happy that you’re there and interacting with him. He could care less that two weeks ago he was in the hospital and things were really rough. For him life is good, life is happy, it’s fun,” Ward said. 

Ward has also made the incredible decision to share their story online to keep family and friends updated and also be a resource for others dealing with Trisomy 18. She has a Facebook page where she frequently posts updates about Bennett and has been brave enough to share both his accomplishments and setbacks. Here, Bennett has been an inspiration for all, bringing joy to people who have never met him. 

Ward has also connected with a community of families who also have children with Trisomy 18; she has even gotten to know a few families within the area. Even more, she has been able to share Bennett’s experiences with the hope of encouraging others who are going through similar situations. 

Beating all odds, Bennett is now three years old and thriving. He will start school as soon as Ward feels it is safe enough with COVID where he will receive the social interaction that he loves so much. The Ward family remains hopeful and positive while enjoying Bennett’s lively personality and watching him reach new accomplishments every day. 

For the Wards, they know Trisomy 18 poses many challenges, but it has not meant those who have it cannot have a fulfilling and happy life. Bennett Ward is a reminder of this positivity and continues to be an inspiration for all.