Photo credit to Ward family

Andy and Mallorie Ward’s newborn, Bennett, is photographed during his extended stay in Iowa City hospital’s NICU.

At 3:33 a.m. on Nov. 13, Bennett Ward made his entrance into this world. His arrival, though, was not exactly a family’s perfect birth plan.

Andy Ward is a special education teacher at Pleasant Valley High School and his wife, Mallorie, teaches Spanish at Pleasant Valley Junior High School. Their oldest daughter, Addie, is 5 years old and their youngest daughter, Nora, will turn 3 later this month. At the end of the previous school year, the couple announced to family and friends that they were expecting the newest addition to their family.

Like any other couple, the Wards were delighted to know they would be having another child and went through the motions of doctor visits and other routine practices. At a routine visit, the ultrasound showed a possible abnormality–fluid around the baby’s brain.

To address this concern, the couple was referred to Iowa City hospitals, where a specialized visit could answer their questions. After their ultrasound, the doctor informed the couple he believed there was a problem; his suspicion was that the Wards’ unborn child had Trisomy 18. This disease is also known as Edwards Syndrome and is a life-threatening disorder where the baby has three copies of the 18th chromosome.

This tripled chromosome comes from an error during cell division and drastically attacks the development of the fetus. Many times, it is fatal before birth. Trisomy 18 occurs in 1 in 6000 live births and, heartbreakingly, only around 10 percent of affected babies are able to survive past infancy.

Following this visit in Iowa City, the Wards opted for a blood test that confirmed the diagnosis with 99 percent certainty. It was during this time they learned they were having a baby boy, but also that their son may have Klinefelter Syndrome, too. This would mean his genetic chromosomes are comprised of “XXY” rather than the typical “XY” chromosome for males.

These two extra chromosomes, one from Edwards Syndrome and one from Klinefelter Syndrome, are a rarity and the doctors have not been entirely sure how the two will interact with each other. Still, the Wards had an immense amount of hope. In their hearts, they knew they had the support and love that would provide Bennett with his best chance at survival.

This was an immense amount of information to take in. Andy remembers feeling confused about how to go about sharing the information with others at first.

“We shared the news of our situation with family and friends and eventually co-workers and students. We always found it difficult to determine when to share and how to share with the people around us,” he said.

The Ward family has a CaringBridge site that has had over 2,500 visits since its creation on Nov.16. In this online journal, the couple details the events in Bennett’s life, beginning on Nov. 12, the day the couple drove to Iowa City when Bennett was born.

On that day, Mallorie had an emergency cesarean section and Bennett was born early the next morning. For most women, the time during childbirth is the scariest of moments. For the Wards, however, the waiting period after Bennett was taken to NICU was one of the most intense situations in their memory.

Bennett’s fragile condition made Mallorie’s time waiting in her recovery room seem unbearable. “[It] was one of the most agonizing times in my life. When they got him out, it was silent. He wasn’t crying. We couldn’t see anything. He was whisked off with the NICU doctors to the corner of the room,” said Mallorie. “We had no idea if he was alive or not.”

But he was alive.

Bennett has defied so many odds in such a small amount of time. This is perfectly described in the words of his mother when she said, “From the beginning, it was clear Bennett did have some issues that pointed towards a chromosomal disorder, but he was already showing he was a fighter.”

Even at this young age in his life, Bennett has already defied many of the odds he has had against him. The Ward family has been able to focus on the positive aspects of what is happening.

“In hardships, it is easy to go dark; it is easy to be angry and resentful to the situation at hand,” Andy said. “It is our responsibility to facilitate our situation into something that brings our family closer together, something that makes us stronger, and to provide our son with the best life possible,” he added.

This week, Bennett is scheduled to be discharged from the hospital, and while he will still have the need to be on oxygen, he will be able to be at home with his family.

The Pleasant Valley community has played a key role in reaching out and creating a support system for the Wards. “We have been overwhelmed by the outreach and support that we have received from our family, friends, the community where we live, and the PV community,” said Andy, who said he appreciates the kind words from friends, family, and those he sees while he is at work more than anyone knows.

“The messages, cards, letters, and gifts for Bennett and for our girls, have been incredible. My wife and I are blessed to work with such caring and supportive people and students. We know that we are in a good place,” he said.

Friends of the family have started a GoFundMe page to help with the family’s many expenses. Additionally, the Quad City Pizza Co. is hosting a fundraiser for the family on Dec. 17.

As they settle into their home as a family of five, the Wards make the daily choice to remain optimistic about Bennett’s condition and progress. “We trust that this situation will be impactful in ways that we cannot begin to imagine,” Andy said.