Desiree Hall is no different than most parents. The Northampton mother could talk for hours about each of her six children.
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| Desiree Hall, her twins Vinny and Joey, and Hall's brother |
Her 10-year-old loves puns and has his own YouTube channel, and her 8-year-old helps care for her brothers and sister. Her 7-year-old buys presents for his siblings with his own money. The family’s 4-year-old, who Hall thought would be her last, talks about being a mommy, too, someday.
Then there are her youngest — identical twins, Vincent and Joseph, born Jan. 5.
These two have a special bond, literally. They spent the first six weeks of their lives connected to each other.
“They’re my miracle babies,” Hall said.
The Fiore brothers were born conjoined, an anomaly that occurs one in every 50,000 to 60,000 births, according to the Children’s Hospital of Philadelphia. Other studies suggest conjoined twins occur in 1 in 100,000 births.
Even more rare are conjoined twins who survive and can be successfully separated. The Fiore brothers are only the 25th pair of conjoined twins since 1957 successfully separated at CHOP, which claims it has separated more conjoined twins than any other hospital in the western world.
Most conjoined twins share at least one vital organ or system and conjoined girls are more common, according to the Mayo Clinic, which is what makes the Fiore boys even more unique among this most unique type of twins.
Doctors initially worried that scans showed the boys shared a liver, which would make separation riskier.
But when they underwent surgery on Feb. 20, the medical team found the boys’ livers were overlapping, making it appear they were one, said Dr. Holly Hedrick, the surgeon who performed the surgery at CHOP.
“They had the very, very, very best situation,” Hedrick added.
Making the very best out of any situation is something that comes naturally to Hall, 33, a single mom. She struggles with health issues while raising her children, as well as taking care of her elderly grandparents who took in Hall when she was 12. First her unique pregnancy, then her health issues combined with her terminally ill grandfather have made her unable to work, she said.
“I’ve just been trying to pray and take it day by day. Financial issues are definitely a stress but I’m so grateful because I know my boys are a miracle and I’m blessed to have them. So I’m trying to not sweat the money end of things,” she said.
Amazing lady
Hall had no plans to expand her family last year. When she developed symptoms that she attributed to a flare up of lupus, an autoimmune disease she was diagnosed with at age 25, she went to the doctor. The news she was pregnant left her stunned. Until a few weeks later, when Hall learned she was having twins who were due in early March.
Twenty-two weeks into her pregnancy, the doctor told her it appeared the twins were conjoined.
Hall was dumbfounded but resolute to carry the babies as long as she could.
“God doesn’t give you more than you can handle,” she said.
The twins are the first children for her boyfriend, who declined to be interviewed, but Hall said he is looking forward to watching them grow up.
Truth be told, Hall wasn’t expecting a good outcome with the pregnancy. She studied nursing in college. She knew conjoined twins have a high rate of miscarriages, still births, and low survival rates even after they are born. She joined a social media group for parents of conjoined twins where the stories often had heartbreaking endings.
“I was too scared to be excited,” Hall said.
While Hall prayed for the best outcome, she prepared for the worst, she said. She didn’t buy anything for the twins. She didn’t want a baby shower.
As it turned out, she didn’t need one.
Employees at Holland Elementary School, where three of Hall’s children attend, stepped in, Principal Joseph McClay said. Employees held a drive to collect baby essentials like diapers, clothes, toys and a pack-n-play for the twins and items for Halls older children, McClay said.
The staff took up a collection so Hall’s kids could attend the after-school daycare program, allowing Desiree to spend more time with the twins at CHOP after they were born.
Recently, the school organized a dress-down day where staffers donated money to wear casual clothes to work. They collected nearly $2,300 in contributions from employees, their family and neighbors. The money was used to buy car seats, a stroller, crib, changing table and high chairs.
“Desiree is an amazing lady. She cares for her grandparents and has always kept such a positive outlook despite the ups and downs that were in front of her,” McClay said. “Her children are wonderful kids. We looked forward to the day when Vinny and Joey come to Holland as kindergartners and we get to be reminded each day that they’re miracle children.”
So blessed
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| Three of Hall's other children with twins Vinny and Joey |
The Fiore boys — who weighed a combined 8 pounds — were delivered by C-section after Desiree went into labor about two weeks before doctors had scheduled the surgery, she said. Initially, the premature babies required breathing and feeding tubes, but they were weaned as they grew bigger and stronger.
The boys were joined at the abdominal wall. Roughly 75 percent of conjoined twins are connected at the chest wall or upper abdomen so the babies face each other, according to CHOP. They shared a diaphragm and xiphoid process (the cartilage at the end of the breastbone), which could be divided. Each Fiore twin had separate GI tracks and other abdominal organs, Hedrick said.
Surgery to separate conjoined twins can range from relatively easy to complex depending on the point of attachment and the internal parts that are shared, Hedrick said. Often, surgery results in the death of one or both twins, particularly if they are joined at the head or share a vital organ, she added.
Typically, conjoined twins who are candidates for separation can’t undergo the surgery for months because their bodies need to get stronger (conjoined twins are typically born premature), and doctors need to monitor their bodies and prepare and plan the surgery. Conjoined twins are often implanted with tissue expanders to grow the necessary soft tissue to cover and close at the separation points, Hedrick said.
The Fiore twins had to wait only a little more than a month after their birth before they could be separated because they didn’t share any major organs and didn’t require extensive skin grafts, Hedrick said.
The surgery took about three hours, Hedrick said. Each boy had his own color-coded medical team: blue for Vincent and green for Joseph.
“This is straightforward and we’re always grateful when things are straightforward,” the doctor said.
The boys were discharged from CHOP on March 8. Doctors will continue to monitor the brothers, who now each weigh a little over 6 pounds, to make sure they hit their developmental milestones.
Doctors also will watch for medical issues. Vincent has a slight heart defect. The brothers could develop hernias where implanted mesh was used to complete their once-shared abdomen walls. But otherwise Hedrick doesn’t predict any lasting consequences — other than faux belly buttons and 4-inch chest scars.
The brothers often can be found hugging each other, mimicking how they came into the world, Hall said. She added that they get cranky when they are too physically far apart, but calm down when they are moved close together.
“They do miss each other,” she said.
The twins’ brothers and sisters love taking turns holding them and feeding them. They even fight over who gets to read them books.
“I’m so blessed. My kids are so good,” she said.
Big sister Gabrielle, 8, loves to help feed her brothers. On a recent snow day, instead of sleeping in, she got up to help Desiree give the boys their morning bottle. Gabrielle thought it was cool that her brothers were connected, because they hugged a lot, she said.
Big brother Carl, 10, was surprised he was getting two little brothers, but he said he is happy.
“It’s pretty fun to have them around,” he said. “If I’m feeling sad, they’re very cute and they’ll probably cheer me up.”
And while Hall loves kids, six is more than enough, she said.
“Oh, we are done,” she said. “I’m so done.”
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