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Fort Worth, TX,
January
25,
2023
|
11:22 AM
America/Chicago

‘WE DID IT’: CONJOINED TWIN GIRLS SEPARATED AT COOK CHILDREN’S MEDICAL CENTER
MAKE HISTORY

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Amie & Jamie's Story (Full-Length Version)

MEDIA PARTNERS MAY USE THIS CONTENT FOR NEWS STORIES AND BROADCASTS WITH CREDIT
TO COOK CHILDREN'S.

Summary

Sisters JamieLynn and AmieLynn underwent surgery on Monday, becoming the first
conjoined twins to be separated at Cook Children’s Medical Center.

Jamie and Amie lay face-to-face and shared a liver, which was successfully
separated during the 11-hour procedure.

After the surgery, the girls returned to Cook Children’s NICU to begin their
journey to recovery, this time on the road together, but separate.

Parents James Finley and Amanda Arciniega of Saginaw, Texas were overjoyed to
reunite with their girls and see them in their separate cribs, laying on their
backs for the first time on Monday evening.

Doctors are optimistic as the girls heal. Their primary focus will be breathing
support and pain control in the next few days.

The girls were born in October via C-section at Texas Health Harris Methodist
Hospital Fort Worth. They were transferred to the Cook Children’s NICU to remain
under the care of their neonatologists. Jamie and Amie love music and listening
to their grandmother sing.

Written by Ashley Antle.

All babies are special, but 16-week-old twin sisters JamieLynn Rae and AmieLynn
Rose Finley are making history in one of the most unique ways possible. On
Monday, they became the first conjoined twins ever to be separated at Cook
Children’s Medical Center in an 11-hour procedure months in the making.

Conjoined twins are estimated to occur in only 1-in-200,000 live births.
JamieLynn and AmieLynn are omphalopagus twins, meaning they are joined at the
abdomen and share one or more internal organs. In their case, it’s a liver.

“As far as conjoined twins that reach and stay viable after birth, at least for
the first few days, there's really only about five to eight of those per year on
the entire planet, so it is very rare,” said Jose Iglesias, M.D., Cook
Children’s medical director of pediatric surgery.

Even so, the girls’ story begins like many others.

James Finley and Amanda Arciniega of Saginaw, Texas, wanted to add one more baby
to their family of five. The youngest of their three children at the time,
7-year-old James, was elated at the prospect. He’s always wanted a younger
sibling and playmate.

Little did any of them know — or expect —their hope for one more would become a
gift of two.

“She said that's the baby's head,” Finley said, describing how their
obstetrician shared the unexpected news of twins at their 10-week ultrasound. “I
was like, ‘What is that?’ and she said, ‘That's the other baby's head.’ And I
was like, ‘What?’”

* JamieLynn and AmieLynn Family

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DOUBLE BLESSING

The revelation of the twins' connection came early in the pregnancy. The 10-week
ultrasound showed the babies had little to no separation between them. Images
taken at the following appointment confirmed the babies were conjoined.
Suddenly, the family’s excitement for welcoming two new additions was covered by
a cloud of questions, uncertainty and fear.

“I would not have thought in a million years that I would have twins,” Arciniega
said. “And then conjoined twins on top of that.”

In the months that followed Arciniega enjoyed an easy and uncomplicated
pregnancy, save for the many appointments with specialists across the state to
determine who best to deliver the twins and what hospital was most capable to
care for them after birth.

The couple settled on maternal-fetal specialist Bannie Tabor, M.D., whose
practice is located at Texas Health Harris Methodist Hospital Fort Worth in Fort
Worth, Texas. He is also the medical director for Cook Children’s Fetal Center.
In his 32-year career of caring for high-risk pregnancies, Dr. Tabor has
delivered more than 5,000 babies.

Soon after taking Arciniega and her unborn babies as patients, Dr. Tabor reached
out to Dr. Iglesias, a longtime colleague, to review the case and discuss the
possibility of separation.

“It was a big surprise when I got the first phone call from Dr. Tabor saying he
had conjoined twins that he was starting to follow,” Dr. Iglesias said. “At that
time they really didn't know the babies’ anatomy specifically. So I said there
is a big range of possibilities and we need to see what happened with the
initial MRI to make some plans from there.”

Many conjoined twins die in utero or do not survive long after birth because of
the nature of their joining and the organs they share. But scans showed
JamieLynn and AmieLynn each had their own heart and heart sac, increasing their
chance of survival and making them candidates for future separation.

“I think the key thing when we first met the family was they had a lot of
anxiety about the situation, what the options were and what they could do,” Dr.
Tabor said. “I think I gave them the confidence that, while I could not promise
everything would work out, we would do everything that we could and, with
everybody involved — from me to the neonatologists to the surgeons — they were
in the right place.”

FAMILY TIES

Texas Health Harris Methodist Hospital Fort Worth and Cook Children’s Medical
Center have a long history of physical and professional collaboration. Both
facilities are located in the heart of Fort Worth’s Medical District along a
historical stretch of Pennsylvania Avenue that cattle barons once called home.
The two facilities are joined by a skywalk and, in Cook Children’s early days,
even shared some utilities. Local neonatologists practice at both hospitals’
neonatal intensive care units (NICUs) and many Texas Health Fort Worth
obstetricians, including Dr. Tabor, regularly consult with Cook Children’s
pediatric specialists.

“The working relationship between the whole team, that's made possible by the
close relationship of the hospitals, allows us to be the center that can provide
this type of highly advanced service to North Texas so families don’t have to go
halfway across the state or halfway across the country or even to Dallas for
care,” Dr. Tabor said.

Early in the pregnancy, Finley and Arciniega also consulted Ben Gbulie, M.D.,
F.A.C.S, of Posh Plastic and Reconstructive Surgery in Mansfield, Texas, and a
member of the plastic surgery faculty at Cook Children’s. They learned of Dr.
Gbulie through Finley's mother, whose friend told her of a local plastic surgeon
with experience in multiple conjoined twin separation surgeries.

After long discussions with the couple, he pointed them toward Cook Children’s
Medical Center.

“I explained to them that traveling for surgery is not a problem, and a lot of
people do that,” Dr. Gbulie said. “But if you can get the same quality of care
where you live, it's always better because you want to be able to have long-term
follow-up. While this is a major, complex operation, it is not something that is
beyond what I felt Cook Children’s could do.”

Finley and Arciniega were relieved to hear Dr. Gbulie’s recommendation. The
family lives less than 30 minutes from Cook Children’s. To know that they could
stay close to home, close to their other children and close to their support
system was comforting.

Cook Children’s was also familiar. Two of the couple’s older children have
received care at the medical center. Their daughter, Aaliyah, 13, spent weeks in
Cook Children’s pediatric intensive care unit (PICU) when she was 7 for a nearly
deadly bacterial infection called Bartonella henselae. It’s commonly known as
cat scratch fever and can be acquired when scratched by a cat. Big brother,
James, is a frequent visitor to Cook Children’s as he manages sickle cell
disease.

“Sometimes we come in here and I’m like, ‘Hey, I’ve seen you before,’ to a
doctor that has been around our son or Aaliyah, and they’re like, ‘Hey, I’ve
noticed you, too,’” Arciniega said. “So it’s kind of like we’re family here.”

“Everybody’s always treated us nice,” Finley added. “It takes a lot of pressure
and anxiety off when you know your kid is going to be taken care of.”

DELIVERY DAY

As the babies grew in utero, Dr. Tabor closely monitored their progress and,
together with a team of doctors from both hospitals, prepared a delivery and
post-natal game plan. During Arciniega’s third trimester, Dr. Tabor became
concerned with the slow growth rate of the babies and determined it was best to
deliver them early.

On Oct. 3, 2022, at 34 weeks gestation, JamieLynn and AmieLynn were delivered
via C-section at 10:40 a.m. at Texas Health Fort Worth. Arciniega required a
vertical incision over the traditional horizontal approach to delivering the
babies safely. Both weighed 4 pounds, 7.8 ounces. JamieLynn was the longer of
the two, measuring 16.9 inches to AmieLynn’s 16.5 inches.

“It wasn’t an easy delivery, but we made it look easy,” Dr. Tabor said
reflecting on that day.

Upon delivery, neonatologists Chad Barber, M.D. and Mary Frances Lynch, M.D.,
took over the babies’ care in Texas Health Fort Worth’s NICU. Like with any set
of identical twins, telling them apart can be tricky and, if mistaken, dangerous
in the hospital setting. To help keep their identities straight, Dr. Barber and
Dr. Lynch chose a favored color for each girl, purple for JamieLynn and green
for AmieLynn, and used Sharpies to mark each baby’s color on one of their nails.

After a month, the girls were transferred to the NICU at Cook Children’s Medical
Center where they remain today, still under the care of Dr. Barber and Dr. Lynch
who practice at both Texas Health Fort Worth and Cook Children’s. The girls’
color codes followed them there, too, and are used as an additional layer of
safety when identifying the babies for medication administration, feedings and
individual care needs. They even inspired the purple and green crayon costumes
the girls sported for Halloween.

* JamieLynn and AmieLynn
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HOME AWAY FROM HOME

In the NICU room, which has been their babies’ home since November 2022, Finley
and Arciniega attend to their infants like many other parents of twins —
together. It takes two to pick them up, especially considering how they must
navigate the tubes and wires that monitor the babies’ vitals and deliver
nutritional support. Scripted signs handmade by the NICU nurses hang on the
wall, making their private NICU room look a little more like a sweetly appointed
home nursery.

The girls lay face-to-face on their sides, carefully and frequently repositioned
from one end of their shared crib to the other in order to give equal time on
each side. Although currently the smaller of the two, JamieLynn is wide-eyed and
alert. Her gaze fixes on and follows those that enter the room. She’s feisty and
makes sure everyone knows when she is unhappy. Sister, AmieLynn, is more
reserved. She’s often the calmer and more chill of the two.

Together, the beloved girls evoke the attention of their parents who make sure
there are enough cuddles and kisses to go around, especially from their
protective dad. He’s already planning ahead for the days when young men come
calling for any one of his three daughters.

“Every window will have a rose bush underneath,” Finley said with a laugh, but
only half kidding.

Their days in the NICU are filled with feedings, naps, diaper changes, baths and
a number of therapies to help with mobility, strength and eating. The girls
respond especially well to music therapy and love it when Grandma sings to them
during her visits. Their siblings, brother Isaiah, 15, Aaliyah and James, visit
regularly, too. James loves to entertain them, and the girls respond with
delight.

Their face-to-face positioning makes feedings and diaper changes a challenge,
but nurses have developed creative workarounds to accomplish both. Most of the
time they can be bottle-fed one at a time by a single caregiver, with AmieLynn
often waiting patiently until sister is satisfied. When patience runs out,
feeding is a two-person job.

The older they get, the more they move their limbs. It’s not uncommon for one to
unintentionally punch and sometimes anger the other. The girls wear mittens to
protect each other from scratches.

All the while doctors monitor their progress, study their anatomy and plan for
the enormous task of separation.

JOURNEY TO SEPARATION

The timing of conjoined twin division varies from case to case and primarily
depends on how complicated the anatomy is. In the girls’ case, their anatomy and
growth support a surgery date sooner rather than later.

While the girls are thriving in the NICU, they are not growing at the same rate,
partly because they share some blood supply.

“One is stealing groceries from the other, basically,” Dr. Barber said.

AmieLynn is beginning to develop scoliosis. Feedings are becoming more and more
challenging with their size, mobility and face-to-face proximity. While
separate, their hearts are exceedingly close together and grow ever closer as
the girls age.

“They're pretty much at their maximal, I like to say, baby stretchability,” Dr.
Iglesias said. “So their skin is pretty stretchy. Their abdominal walls are
stretchy. We've got the benefits of using that. By separating early, they're not
going to be as used to the loss of having essentially part of you that is
different, so hopefully, that transition will be better. There are not very many
more benefits to waiting longer versus doing it now.”

At nearly 4-months-old, the time is right.

It’s taken months of planning and collaboration. Countless hours have been spent
building a comprehensive medical team, studying scans of the girls, building
models of their anatomy, mapping out potential surgical solutions, identifying
the what-ifs, troubleshooting potential problems, inventorying equipment needed
to accomplish the surgery, preparing the operating room (OR) and rehearsing the
carefully choreographed surgical production. Dr. Barber estimates there have
been at least 100 medical professionals, from physicians to nurses to therapists
and other clinical specialists, intimately involved in the girls’ care and
surgical planning.

“I think the teamwork is a great point to bring up because it's everything,” Dr.
Iglesias said. “It takes a huge team to get all of this working as smoothly as
you can make it, given the unknowns that we'll have. Having everybody open and
honest talking to each other regardless of their position, that's the definition
of teamwork.”

The surgery comes with great risk and a number of unknowns. Because they must
dissect the liver, an extremely vascular organ, bleeding is a concern. A
significant risk of infection also exists, for which the twins will be monitored
weeks into recovery. Doctors are unsure of how the babies’ hearts will respond
to their new anatomic position as the girls lay on their backs for the first
time in their lives. Then there are questions about how to best close the
abdominal wall, many of which can not be fully answered until separation is
accomplished. The girls may require additional surgeries to complete closure and
reconstruction.

“In order to prepare for this, it's a lot of practice, practice, practice and
more practice, trying to really think of every possible scenario so that we're
not surprised by anything,” Dr. Barber said. “There's always going to be
unexpected things, but if you're prepared for the worst possibilities and the
most unlikely outcomes, then you can hopefully not get too caught off guard.”

For their part, mom and dad pray, leaning on the same faith in God that carried
them through when their older children faced medical crises.

* JamieLynn AmieLynn manis and pedis

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SEPARATION DAY

Monday, Jan. 23, 2023. JamieLynn and AmieLynn are ready for their big day.
Thanks to their NICU nurse, they’re sporting fresh mani-pedis in their signature
purple and green to help identify them in the OR.

Before the sun rises, family and members of the medical team gather in the
girls’ NICU room. It’s calm and quiet as mom and dad steal a few final
pre-surgery kisses from their babies. Grandma sings softly. Others pray. The
girls are awake, content and comfortable. Just before 7:30 a.m., they begin
their journey to the OR.

Inside the OR is a sea of medical professionals: three anesthesiologists, four
pediatric surgeons, two plastic surgeons and about a dozen other clinical
professionals. They are separated into two teams, one for each girl. Those in
purple scrub hats belong to JamieLynn’s squad, while Team AmieLynn dons the
green. Everyone will work together until the babies are separated, then each
team will focus solely on their assigned baby.

“The reason that's important is because you need focus,” Dr. Gbulie said. “You
want to minimize room for errors and the risk of confusion. So little things
like color-coding everyone and everything minimizes the risk of giving the wrong
medication on either side. It's truly a community effort that involves a
multi-specialty team.”

The first few hours involve inserting central lines for delivering anesthesia
and placing breathing tubes. Then, sedation begins. The process is slow and
methodical.

“When we're talking about taking care of conjoined twins compared to taking care
of just a single baby, one of the biggest questions is what is shared, and there
does seem to be some shared circulation between the girls,” said Chandra
Reynolds, M.D., the lead Cook Children’s anesthesiologist on the surgical team.
“What is the response going to be for baby B when we give baby A certain
medication? It’s a very slow and stepwise approach until we better understand
what happens to one when the other receives medication. The key thing is to give
one baby a certain amount of medication, watch and wait for a while to see how
things are going and, based on that response, we can give her sister a certain
amount as well.”

Once the girls are safely asleep, the surgeons begin marking incision lines. At
12:28 p.m., the separation officially begins. Guided by plastic surgeons, they
are careful to make cuts that give the girls’ abdomens the best chance of
closure.

First, surgeons open the abdominal wall and dissect the lower part of the
sternum and the liver. A little under two hours in, the family receives word
that the girls’ shared liver is separated. The private waiting area where the
family anxiously awaits news of progress erupts with cheers. Finley and
Arciniega embrace.

Surgeons painstakingly work layer-by-intricate-layer until they reach the
backside of the abdominal wall where they complete the dissection.

* Day of AmieLynn and JamieLynn Surgery
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The update everyone’s been waiting for comes at 3 p.m. JamieLynn and AmieLynn
are officially separated and on their backs. Tears and shouts of praise flow
from family and friends in the room. Their relief is palpable.

“I want to tell you that all of the people in there taking care of them cheered
even louder than this,” said the nurse delivering the news, followed by laughter
from the family.

There is still a long way to go.

“Once the babies are finally physically separated, then we have to initially
look for other additional anomalies and see if there is anything else going on,”
Dr. Iglesias said. “We transfer one baby to the other bed where one surgeon will
follow and an additional surgeon will pick up with the other and continue to do
the evaluation.”

Once each baby is ready for closure, their assigned pediatric surgeons, Dr.
Iglesias for JamieLynn and Marty Knott, D.O, for AmieLynn, begin closing the
chest and abdomen. Plastic surgeons Dr. Gbulie and Eric Hubli, M.D., Cook
Children’s Surgeon in Chief and medical director of craniofacial and cleft
surgery, assist with skin closure.

By 6 p.m., the surgery is complete. This time Dr. Iglesias, Dr. Gbulie and Dr.
Knott deliver the news to the family.

“We did it,” Finley said in response. “I don’t know what I did, but we did it.”

To this Dr. Iglesias replies, “You trusted us. That’s what you did.”

All the while, neonatologists Dr. Barber and Dr. Lynch stand by for the girls’
post-surgery return to the NICU.

One by one, the sisters exit the OR on their way back to their familiar home
away from home in the NICU. For the first time in their lives, they lay on their
backs, each in their own crib. The family gets a momentary glimpse from afar as
the girls are wheeled past the waiting room, and cheer them on as they pass.
About an hour later, mom and dad are able to join the girls in the NICU.

The first look at their twins in separate beds brings a wave of emotion. For the
first time, they must divide their attention between the two. They start with
JamieLynn. Arciniega places her pinky finger in her baby’s hand.

“It’s OK, Mommy’s here,” she whispers.

Then to AmieLynn. Finley gushes about her strength and how proud he is of his
quiet fighter.

It’s a monumental moment, but none of the physicians are ready to say “mission
accomplished.”

“The challenges the girls may face after surgery are very difficult to fully
prepare for,” Dr. Lynch explained. “We do still have some unknowns as far as how
their shared vasculature and their shared anatomy and positioning over these
last three months will affect them. As Dr. Barber alluded to earlier, we have to
prepare for many different scenarios. The things that will worry us and that
we’ll be the most focused on in the first few days are going to be breathing
support and pain control. As you can imagine, this is an incredibly big surgery
and pain control will be at the top of our list.”

They’ll be watching for signs of infection, too.

“The soft tissue usually swells over the first two to three days,” Dr. Gbulie
said. “If you get through those two to three days, you're usually OK. That being
said, we are going to be going through potentially some bowel and definitely the
liver, so there is a relatively higher risk of wound infection and that usually
shows up at about five to 10 days.”

* Previous
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ROAD TO RECOVERY

Recovery is best described as slow.

“I'm sure mom and dad are going to think we're moving in slow motion,” Dr.
Iglesias said. “The first steps are going to be healing of the very large
incision that is required to separate them. We have to wait for their gut to
start to work before we start allowing nutrition to move through their
intestines. Some of these things may require staged procedures so the family's
ready that the abdominal closure may take more than one operation. We're hopeful
it won’t, but that's a possibility.”

They’ll need extensive rehabilitation, too, which will include nutritionists,
physical therapists, occupational therapists, speech therapists and more.

Doctors say they’re optimistic but will continue to hold their collective breath
until they are waving goodbye to the girls as they leave Cook Children’s for
their first ride home.

“I'm very hopeful that they're going to have a good recovery and lead healthy
lives in the future,” Dr. Iglesias said. “They're going to have a bit of a ramp
up from the recovery, but I think they're going to be able to get there
eventually, and very close to normal if not completely normal.”

Until that chapter of this story begins, JamieLynn’s sassy spirit and AmieLynn’s
sweet smile remain on full display as their NICU team continues to care for
their daily medical, physical and emotional needs. This time, together, but
separate.

Cook Children’s is a not-for-profit organization. Donations to Cook Children’s
Health Foundation allow us to care for our families when and how they need us.
Give today to support patient families like Jamie and Amie. Go here. To donate
items at the Medical Center for Jamie and Amie, email AandJ@cookchildrens.org.

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CONTRIBUTORS

Ashley Antle
Writer
Ashley.Antle@cookchildrens.org

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Kim Brown
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‘We Did It’: Conjoined Twin Girls Separated at Cook Children’s Medical Center
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