Shared Joy Doubles Joy

DAUGHTER KENNEDY IS A FIRST GRADER AND TWINS AMELIA AND SARABETH ARE BUSY, CURIOUS THREE-YEARS-OLDS, IRWINS ARE LIVING THE ORDINARY HECTICNESS OF A YOUNG FAMILY. JUST OVER FOUR YEARS AGO, HOWEVER, THEY CIRCUMSTANCES THEIR FAMILY WOULD ENDURE, MAKING AN ORDINARY FAMILY ROMP IN THE PARK THESE DAYS ITS OWN

SIX AND UNDER, ALYSON AND PHIL IRWIN HAVE THEIR HANDS FULL. OLDEST DAUGHTER KENNEDY IS A FIRST GRADER AND TWINS THREE-YEARS-OLDS, ABOUT TO TURN FOUR. BY ALL APPEARANCES, THE IRWINS ARE LIVING THE ORDINARY HECTICNESS OF A YOUNG THEY NEVER COULD HAVE IMAGINED THE EXTRAORDINARY CIRCUMSTANCES THEIR FAMILY WOULD ENDURE, MAKING AN ORDINARY

OWN EXTRAORDINARY JOY. IKE MOST PARENTS WITH THREE KIDS AGED SIX AND UNDER, ALYSON AND PHIL IRWIN HAVE THEIR HANDS FULL. FIRST GRADER AND TWINS AMELIA AND SARABETH ARE BUSY, CURIOUS THREE-YEARS-OLDS, ABOUT TO TURN FOUR. BY ALL APPEARANCES, THE HECTICNESS OF A YOUNG FAMILY. JUST OVER FOUR YEARS AGO, HOWEVER, THEY NEVER COULD HAVE IMAGINED THE EXTRAORDINARY WOULD ENDURE, MAKING AN ORDINARY FAMILY ROMP IN THE PARK THESE DAYS ITS OWN EXTRAORDINARY JOY. IKE MOST PARENTS WITH THREE AND PHIL IRWIN HAVE THEIR HANDS FULL. OLDEST DAUGHTER KENNEDY IS A FIRST GRADER AND TWINS AMELIA AND SARABETH ARE BUSY, ABOUT TO TURN FOUR. BY ALL APPEARANCES, THE IRWINS ARE LIVING THE ORDINARY HECTICNESS OF A YOUNG FAMILY. JUST OVER FOUR YEARS HAVE IMAGINED THE EXTRAORDINARY CIRCUMSTANCES THEIR FAMILY WOULD ENDURE, MAKING AN ORDINARY FAMILY ROMP IN THE PARK THESE JOY. IKE MOST PARENTS WITH THREE KIDS AGED SIX AND UNDER, ALYSON AND PHIL IRWIN HAVE THEIR HANDS FULL. OLDEST DAUGHTER KENNEDY AMELIA AND SARABETH ARE BUSY, CURIOUS THREE-YEARS-OLDS, ABOUT TO TURN FOUR. BY ALL APPEARANCES, THE IRWINS ARE LIVING THE YOUNG FAMILY. JUST OVER FOUR YEARS AGO, HOWEVER, THEY NEVER COULD HAVE IMAGINED THE EXTRAORDINARY CIRCUMSTANCES THEIR FAMILY

ORDINARY FAMILY ROMP IN THE PARK THESE DAYS ITS OWN EXTRAORDINARY JOY. IKE MOST PARENTS WITH THREE KIDS AGED SIX AND UNDER, HAVE THEIR HANDS FULL. OLDEST DAUGHTER KENNEDY IS A FIRST GRADER AND TWINS AMELIA AND SARABETH ARE BUSY, CURIOUS THREE-YEARS-OLDS, ALL APPEARANCES, THE IRWINS ARE LIVING THE ORDINARY HECTICNESS OF A YOUNG FAMILY. JUST OVER FOUR YEARS AGO, HOWEVER, THEY EXTRAORDINARY CIRCUMSTANCES THEIR FAMILY WOULD ENDURE, MAKING AN ORDINARY FAMILY ROMP IN THE PARK THESE DAYS ITS OWN

By Linda Learman

IKE MOST PARENTS WITH THREE KIDS AGED SIX AND UNDER, ALYSON AND PHIL IRWIN HAVE THEIR HANDS FULL. OLDEST DAUGHTER KENNEDY IS A FIRST GRADER AND TWINS AMELIA AND SARABETH ARE BUSY, CURIOUS THREE-YEAR-OLDS, ABOUT TO TURN FOUR. BY ALL APPEARANCES, THE IRWINS ARE LIVING THE ORDINARY HECTICNESS OF A YOUNG FAMILY. JUST OVER FOUR YEARS AGO, HOWEVER, THEY NEVER COULD HAVE IMAGINED THE EXTRAORDINARY CIRCUMSTANCES THEIR FAMILY WOULD ENDURE, MAKING AN ORDINARY FAMILY ROMP IN THE PARK THESE DAYS ITS OWN EXTRAORDINARY JOY.

“We wanted to be surprised by the gender,” Alyson recalled about what she assumed would be a routine 20-week ultrasound during her pregnancy in February 2019. Already parents to then three-year-old Kennedy, Phil and Alyson had decided before the appointment that, just for fun, they would ask the technician to write the gender down on a slip of paper and seal it in an envelope they could open months later, after delivery. But when the technician left the room after looking at the ultrasound and returned with a doctor, the appointment took a somber and shocking turn: the Irwin’s learned they were having twins, and the twins were conjoined.

MOST PARENTS WITH THREE KIDS AGED SIX AND UNDER, ALYSON AND PHIL IRWIN HAVE THEIR HANDS FULL. OLDEST DAUGHTER KENNEDY AMELIA AND SARABETH ARE BUSY, CURIOUS THREE-YEARS-OLDS, ABOUT TO TURN FOUR. BY ALL APPEARANCES, THE IRWINS ARE LIVING THE ORDINARY FAMILY. JUST OVER FOUR YEARS AGO, HOWEVER, THEY NEVER COULD HAVE IMAGINED THE EXTRAORDINARY CIRCUMSTANCES THEIR FAMILY ORDINARY FAMILY ROMP IN THE PARK THESE DAYS ITS OWN EXTRAORDINARY JOY. IKE MOST PARENTS WITH THREE KIDS AGED SIX AND UNDER, HANDS FULL. OLDEST DAUGHTER KENNEDY IS A FIRST GRADER AND TWINS AMELIA AND SARABETH ARE BUSY, CURIOUS THREE-YEARS-OLDS, APPEARANCES, THE IRWINS ARE LIVING THE ORDINARY HECTICNESS OF A YOUNG FAMILY. JUST OVER FOUR YEARS AGO, HOWEVER, THEY NEVER EXTRAORDINARY CIRCUMSTANCES THEIR FAMILY WOULD ENDURE, MAKING AN ORDINARY FAMILY ROMP IN THE PARK THESE DAYS ITS OWN EXTRAORDINARY THREE KIDS AGED SIX AND UNDER, ALYSON AND PHIL IRWIN HAVE THEIR HANDS FULL. OLDEST DAUGHTER KENNEDY IS A FIRST GRADER AND BUSY, CURIOUS THREE-YEARS-OLDS, ABOUT TO TURN FOUR. BY ALL APPEARANCES, THE IRWINS ARE LIVING THE ORDINARY HECTICNESS OF YEARS AGO, HOWEVER, THEY NEVER COULD HAVE IMAGINED THE EXTRAORDINARY CIRCUMSTANCES THEIR FAMILY WOULD ENDURE, MAKING THESE DAYS ITS OWN EXTRAORDINARY JOY. IKE MOST PARENTS WITH THREE KIDS AGED SIX AND UNDER, ALYSON AND PHIL IRWIN HAVE DAUGHTER KENNEDY IS A FIRST GRADER AND TWINS AMELIA AND SARABETH ARE BUSY, CURIOUS THREE-YEARS-OLDS, ABOUT TO TURN FOUR. BY ALL LIVING THE ORDINARY HECTICNESS OF A YOUNG FAMILY. JUST OVER FOUR YEARS AGO, HOWEVER, THEY NEVER COULD HAVE IMAGINED THE EXTRAORDINARY CIRCUMSTANCES THEIR FAMILY WOULD ENDURE, MAKING AN ORDINARY FAMILY ROMP IN THE PARK THESE DAYS ITS OWN EXTRAORDINARY JOY. IKE MOST AND UNDER, ALYSON AND PHIL IRWIN HAVE THEIR HANDS FULL. OLDEST DAUGHTER KENNEDY IS A FIRST GRADER AND TWINS AMELIA AND THREE-YEARS-OLDS, ABOUT TO TURN FOUR. BY ALL APPEARANCES, THE IRWINS ARE LIVING THE ORDINARY HECTICNESS OF A YOUNG FAMILY. JUST THEY NEVER COULD HAVE IMAGINED THE EXTRAORDINARY CIRCUMSTANCES THEIR FAMILY WOULD ENDURE, MAKING AN ORDINARY FAMILY ROMP OWN EXTRAORDINARY JOY. IKE MOST PARENTS WITH THREE KIDS AGED SIX AND UNDER, ALYSON AND PHIL IRWIN HAVE THEIR HANDS FULL.

Hope for the Best, Prepare for the Worst

The next day, the Irwin’s, who live in Petersburg, Michigan, were in the care of a high-risk obstetrician at the University of Michigan in Ann Arbor. “It was very much a roller coaster,” Alyson said. “Palliative care came into every appointment, trying to brace us for whatever may come.”

“There’s not many success stories,” Phil said. “Our doctors very much prepared us for the worst-case scenario. They told us maybe we would have a few hours with [the twins] in the O.R. after the c-section, but probably wouldn’t be able to take them home.”

Statistically, the news was grim. According to 2022 statistics from the National Institute of Health (NIH), conjoined twins are exceptionally rare, occurring in about 1 in 200,000 births. The estimated rate of stillbirth is 60%. About 35% don’t live past the first day after delivery. Overall, the total survival rate for conjoined twins is 7.5%.

“For me, the only way I felt like I could get through the pregnancy was to be realistic, preparing for the worst,” Alyson said. Phil handled it differently. “I was the opposite. I had to find the positive in every single appointment,” he said.

JOY. IKE MOST PARENTS WITH THREE KIDS AGED SIX AND UNDER, ALYSON AND PHIL IRWIN HAVE THEIR HANDS FULL. OLDEST

GRADER AND TWINS AMELIA AND SARABETH ARE BUSY, CURIOUS THREE-YEARS-OLDS, ABOUT TO TURN FOUR. BY ALL APPEARANCES, THE IRWINS HECTICNESS OF A YOUNG FAMILY. JUST OVER FOUR YEARS AGO, HOWEVER, THEY NEVER COULD HAVE IMAGINED THE EXTRAORDINARY CIRCUMSTANCES ENDURE, MAKING AN ORDINARY FAMILY ROMP IN THE PARK THESE DAYS ITS OWN EXTRAORDINARY JOY. IKE MOST PARENTS WITH THREE KIDS AND PHIL IRWIN HAVE THEIR HANDS FULL. OLDEST DAUGHTER KENNEDY IS A FIRST GRADER AND TWINS AMELIA AND SARABETH ARE BUSY, TO TURN FOUR. BY ALL APPEARANCES, THE IRWINS ARE LIVING THE ORDINARY HECTICNESS OF A YOUNG FAMILY. JUST OVER FOUR YEARS AGO, HAVE IMAGINED THE EXTRAORDINARY CIRCUMSTANCES THEIR FAMILY WOULD ENDURE, MAKING AN ORDINARY FAMILY ROMP IN THE PARK

FORMERLY CONJOINED TWINS TURN FOUR

OLDEST DAUGHTER KENNEDY IS A FIRST GRADER AND IRWINS ARE LIVING THE ORDINARY HECTICNESS OF THEIR FAMILY WOULD ENDURE, MAKING AN

AND TWINS AMELIA AND SARABETH ARE BUSY, CURIOUS THREE-YEARS-OLDS, ABOUT TO TURN FOUR. BY ALL APPEARANCES, THE IRWINS HECTICNESS OF A YOUNG FAMILY. JUST OVER FOUR YEARS AGO, HOWEVER, THEY NEVER COULD HAVE IMAGINED THE EXTRAORDINARY CIRCUMSTANCES

MAKING AN ORDINARY FAMILY ROMP IN THE PARK THESE DAYS ITS OWN EXTRAORDINARY JOY. IKE MOST PARENTS WITH THREE KIDS THEIR HANDS FULL. OLDEST DAUGHTER KENNEDY IS A FIRST GRADER AND TWINS AMELIA AND SARABETH ARE BUSY, CURIOUS APPEARANCES, THE IRWINS ARE LIVING THE ORDINARY HECTICNESS OF A YOUNG FAMILY. JUST OVER FOUR YEARS AGO, HOWEVER,

CIRCUMSTANCES THEIR FAMILY WOULD ENDURE, MAKING AN ORDINARY FAMILY ROMP IN THE PARK THESE

AGED SIX AND UNDER, ALYSON AND PHIL IRWIN HAVE THEIR HANDS FULL. OLDEST DAUGHTER KENNEDY

THREE-YEARS-OLDS, ABOUT TO TURN FOUR. BY ALL APPEARANCES, THE IRWINS ARE LIVING THE ORDINARY NEVER COULD HAVE IMAGINED THE EXTRAORDINARY CIRCUMSTANCES THEIR FAMILY WOULD EXTRAORDINARY JOY. IKE MOST PARENTS WITH THREE KIDS AGED SIX AND UNDER, ALYSON AND

AMELIA AND SARABETH ARE BUSY, CURIOUS THREE-YEARS-OLDS, ABOUT

JUST OVER FOUR YEARS AGO, HOWEVER, THEY NEVER COULD HAVE FAMILY ROMP IN THE PARK THESE DAYS ITS OWN EXTRAORDINARY

ALYSON AND PHIL IRWIN HAVE ABOUT TO TURN FOUR. BY ALL HAVE IMAGINED THE EXTRAORDINARY IKE MOST PARENTS AMELIA AND

As much as statistics necessarily inform and prepare medical teams, patients, and families they care for, they cannot account for individual differences or predict the story of each case. And each case, every good medical practitioner knows, is different.

Every set of conjoined twins has unique circumstances. When a fertilized egg partially divides very early in the pregnancy — the root cause of which is unknown — the result is conjoined twins (when it fully divides, the result is identical twins). The way the embryo partially splits determines where and how the twins are conjoined. Determining whether conjoined twins can be successfully separated depends on whether — and which — vital organs may be shared. While doctors could discern some of this information during Alyson’s pregnancy, some of it couldn’t be known until after delivery. “For a long time, we didn’t share our news, protecting our hearts,” Alyson said. “But when we did start to let people know, it was overwhelming how many people were there to care for us.”

Defying the Odds

Alyson gave birth by scheduled c-section on June 11, 2019, to Amelia and Sarabeth at the University of Michigan Hospital. Born six weeks early at 34 weeks gestation (fetal monitoring indicated some concerns to the girls’ health if the pregnancy went full term), the sisters entered the world with their arms wrapped around each other, conjoined at the chest and abdomen, but otherwise healthy all things considered, weighing nine pounds or about 4 ½ pounds each.

During the girls’ 84-day stay at the University of Michigan C.S. Mott Children’s Hospital’s NICU (neonatal intensive care unit), and in the months that followed, the Irwin’s continued to ride the roller-coaster highs and lows as the medical team learned more about the girls’ anatomy to determine the feasibility of a surgical separation. Even if it could happen, the surgery only would happen once the twins were medically stable and had some time to grow. And then, even under the best possible circumstances, separation is major, complicated surgery involving serious risk and frightening unknowns. 2022 NIH data indicates only 60% of surgically separated twins survive.

Sarabeth and Amelia had separate limbs and organs but shared a sternum (the breastbone). Each girl had her own liver, but their livers were fused at midline. “They had two hearts, but a shared pericardium— the sac protecting the heart,” Alyson said, with Phil adding, “Their heart muscles were actually touching, but they were separate.” Anatomically, this was the best possible news meaning separation was possible, but uncertainty remained. “You become accustomed to seeing what I call the ‘NICU face,’ Phil said of his daughters’ initial hospital stay. “You see these other parents in there or out in the hall every day, and you just kinda know they’re going through something difficult. But a smile, a little bit of grace for those around you goes a long way.”

Although faring better than most conjoined twins, Sarabeth and Amelia were still fragile preemies in the NICU. They required breathing support, feeding tubes, and medical vigilance to protect their immature systems from infection. Living in the day-to-day uncertainty of the NICU where patient stability can change in an instant, the Irwin’s weren’t able to think much about the future and didn’t know if bringing their twins home would ever be possible. But one day, months into their NICU stay, they were happily surprised when, “One of the neonatologists asked, ‘Have you thought about bringing them home? Their heartbeats are strong and they’re relatively healthy,’” Alyson said.

It took a few days to figure out how to transport the girls (an ordinary car seat wouldn’t do, so a car-bed was made for them) and arrange other accommodations, but Amelia and Sarabeth joined their elated parents and big sister Kennedy at home the first week of September 2019. They still had oxygen lines, feeding tubes, and electronic monitors, but home with their family they could grow and get stronger while doctors planned their separation surgery.

That fall, tissue expanders were placed in the side of each girl so that when separation occurred several months later, each would have enough skin to cover their own separately constructed chest wall and abdomen. Using 3-D models of the girls’ anatomy and surgery simulations, the two surgical teams, one for each twin, would use the intervening months to prepare for the one-of-a-kind surgery, scheduled for February 2020 when the girls would be eight months old.

The Only Predictable is Unpredictability

In early 2020 as their surgery date approached, Sarabeth and Amelia got sick. What seemed to be a minor cold turned into pneumonia and the girls were admitted to the PICU (Pediatric Intensive Care Unit) at C.S. Mott Children’s Hospital. Both Phil and Alyson were working full time, caring for Kennedy at home, making trips back and forth to the PICU to be with the twins, doing their best to hold it together and hold on to hope.

Then the Covid-19 pandemic struck. All surgeries were cancelled, and Sarabeth and Amelia were discharged 40 days into their PICU stay, in March 2020, just as the state of Michigan went into pandemic lockdown.

The girls went home still conjoined, still with feeding tubes, oxygen lines, and monitors to watch. Though the Irwin’s previously had caregiving help, they could no longer risk others coming into their home and did it all by themselves. “We became terrified during Covid,” Alyson said, “and kept everyone away so no one would get sick.”

Surgery was rescheduled for August 5, 2020. Covid raged on. As the date approached, when Alyson read the informed consent for surgery, she briefly considered if the daunting and inescapable risks spelled out before her would really be worth it. After the girls had been safely ensconced in the protective care of their parents during the previous five months of Covid, after everything they had been through, Alyson was profoundly grateful for her three beautiful and healthy children no matter what. They had adapted to their “new normal” as a family and they were thriving.

But she also knew how fortunate they were that surgery was even a possibility given how close Sarabeth and Amelia were to having a shared heart, which would have made surgery impossible. “It’s amazing how close we were to not being able to have them separated,” Alyson said. She and Phil signed the form. Their twins, toddlers wanting to be on the move, were 14 months old.

Pillars of Hope

The 11-hour surgery on Sarabeth and Amelia, performed at the University of Michigan, is believed to be the first successful separation of conjoined twins in the state. Surgeons used titanium to reconstruct a sternum for each girl and Gore-Tex fabric to patch the holes that had to be made to separate their shared pericardium, giving each girl’s heart its own sealed protective membrane. “We had amazing care at the hospital,” Alyson said. “The care team has become really good friends, and that makes a huge difference.”

Phil and Alyson have also become part of another kind of care team: they are members of a Facebook group for parents of conjoined twins. The Irwin’s, initially reluctant to share their story, understand the isolation parents of conjoined twins can feel. Knowing that most members of the group do not have children who survive, Alyson said, “We just want to let others know they’re not alone.”

“Just a simple message of ‘how are you?’ It really meant a lot,” Alyson and Phil said, reflecting on the support they received from their medical team, family, and friends. The importance of hope, even when desired outcomes are not met, is increasingly recognized in medical research as critical to support and healing as well. After having to confront difficult realities no expectant or new parents ever wish to face, “It’s been reassuring to see things can turn out,” Alyson said. “The power of prayer is real. It’s important to lean on the people around you and accept [that] different people handle different situations differently.”

Four and Fabulous

On June 11th, 2023, Sarabeth and Amelia will turn four years old. They are in their first year of dance and love to watch big sister Kennedy at her soccer games, dance recitals, and school events. They will attend preschool this fall. “Everyone is great,” Alyson said. “They are very active little girls and love playing outside in the sunshine.”

As the twins grow, they may need more surgeries to adjust the titanium in their respective sternums. But for now, the Irwin’s focus on the day-to-day living of raising a family. “You watch the girls run around and play and wonder if it ever really happened, but then you see the pictures and realize it did,” Phil said. “It was definitely a lot to go through, but it’s very rewarding where we’re at now. Sarabeth is glued to her momma, but Kennedy and Amelia do more on their own or go off with dad. If we meet someone now who didn’t know they were conjoined and tell them, they say they can’t believe it, they’d never know,” Phil said.

“I don’t know if [Sarabeth and Amelia] remember, but they say they do,” Alyson added. “They get along surprisingly well. But they do fight, as sisters do.” Following his wife’s comment, Phil said, “They have a good time bonding-that’s my dad joke.”

Their daughters participate in the levity, too. “Every now and then, Kennedy says, ‘Maybe you should have kept them together,’” Phil chuckled. The implication is that sisterly fights would be fairer if Kennedy wasn’t ganged up on by her two-instead-of-one younger sisters.

Alyson is quick to point out that Sarabeth and Amelia have budding senses of humor, too. Walking outside, “They’ll find an oak tree split in the middle and will say, ‘Oops, stuck together,’” Alyson said.

The big decision in the Irwin household at the time this story went to press is how the twins will celebrate their birthday. One would like to go to Peppa Pig World of Michigan (in Auburn Hills); one would prefer celebrating at Chuck E. Cheese. It’s a dilemma the Irwin’s are grateful to have. “Now we’re just a typical family,” Alyson said, quickly adding, “Well maybe not typical.” She and Phil both laugh out loud at that one. “But everyone’s good, and we’re so happy.” n

Detroit Ypsilanti Clinton

Author Spotlight by Gayle Hazelbaker

This book is recommended for young adults, but anyone can find enjoyment in this fast-moving tale of angels and demons. Written by local novelist, Lisa SchrockOhlinger, this story has what every fantasy reader wants; good vs evil, time travel, reluctant heroes, romance, mystery, and twisty turns. Our tale begins with an angel named Huntress. She is sent to retrieve an unsuspecting mortal named Alex to join the band of Guardians. The day he is plucked from his life in Chicago, he is thrown into a world of danger and magic. A world where all of history is only a portal away. From the very beginning, Alex gets the sense that what he thinks is going on really is not. His new friends are hiding something. Feeling especially drawn to the moody and secretive leader of the group, Huntress, he works to gain her trust only to be rebuffed each time. Finally, he travels back in time to her beginnings and discovers heartbreaking secrets she has been hiding for centuries. Determined to help her heal the pain of her past, he begins a journey of his own to learn who he really is in this world of angels and how he can use his powers to vanquish the darkness.

The characters are fleshed out nicely. Each person in the book is drawn in such a way that it is easy for the reader to relate to them. While the action is quick, thrilling, and cinematic, the characters are key. The story is well-plotted so the narrative moves smoothly to its conclusion or should I say the cliff hanger on the last page. The author’s love of history and research shines in the pages. Her characters time travel to real historic events like the Jonestown massacre in Guyana. While the angels do not alter the course of these events, SchrockOhlinger does use them as part of the plot and development of the characters. She smoothly incorporates fact and fiction. Within the adventure of these angels and demons are sincere messages to the reader on the positive contribution of books “Stories have a strange way of mending the places in our soul that even we fear to tread.” “Books saved me....Their authors would never know the effects of their words, but I would be forever grateful.” As readers, we know her words ring true. Another message, the author shares with the reader is one of selfacceptance and value. “…If there is one thing I’ve learned over the years, it’s that no one is a nobody.” “There isn’t a single person on this earth who isn’t special and capable of doing remarkable things.” Certainly, a great message for the target audience, but one we all should remember, regardless of our age.

A native of Adrian, Schrock-Ohlinger has long been a fan of women centric fantasy. When she was a teen, she watched the movie ‘Van Helsing.’ She developed Huntress as a cross between Anna and Van Helsing. While still in high school she published a version of this story under the title Saving Grace. After more research and many rewrites, the book became

Dancing with Huntress. It is the first installment of the seven book Guardians of Fate series. Besides books, Schrock-Ohlinger enjoys anything Disney and musical theatre. She lives in Adrian with her husband and son where she is hard at work on the second book in the series. If the rest of the series is as good as Dancing With Huntress, you will not want to miss any of it. n