Yale Looks Back on First In-Utero Spina Bifida Procedure, Performed in the Midst of the Pandemic
Contributed by Yale New Haven Health In April 2020, as the world shuttered and health systems were laser-focused on fighting a novel coronavirus, 25 year old Tianna Borst and her unborn daughter prepared to undergo a transformative surgery at Yale New Haven Children’s Hospital (YNHCH) to correct a rare form of spina bifida.
Tianna and her daughter Savera, now 17 months old. At 20 weeks pregnant, Tianna was told her baby had a condition in which the fetus’ backbone and spinal sheath fail to close, exposing the spinal cord and its connecting nerves. “I had never heard of spina bifida,” said Tianna. “I was given the results and left to think the worst. I thought I would lose my baby.”
Tianna, a vet tech at an animal hospital in Michigan, began researching the condition and her options. “I was surprised to learn that every form of spina bifida is its own special snowflake and no other experience would necessarily match mine.” It was during this time that Tianna and her mother separately came up with the perfect name for her daughter, Savera – which translates in Hindi to “new beginning.”
Tianna temporarily moved in with her mother in Connecticut who recommended she connect with providers at Yale New Haven Children’s Hospital. Little did Tianna know, the team at YNHCH had spent the past two years studying and training for a case just like Tianna’s, which would be the first of its kind in Connecticut.
Historically, when a fetus is diagnosed with spina bifida, the closing of the spinal cord is done after birth. This doesn’t protect against potential damage that can occur in the womb, including brain damage from too much or too little cerebrospinal fluid and damage to exposed nerves. Many babies who are treated for spina bifida after birth cannot control their bladder or bowels, need lifelong shunts in their brain to drain fluid and cannot walk without crutches.
However, a multicenter study published in The New England Journal of Medicine showed that when the spinal repair is performed before birth there is a greater chance the child will be able to walk, go to bathroom independently and have a reduced risk of cognitive issues. This is because a lot of the damage that occurs in the womb is prevented and there is a chance for damaged nerves to repair.
There are other factors for a family to consider when opting for this surgery. The baby could be born prematurely or still need a shunt. There are potential complications of future births for the mom because surgical incisions could rupture, and the pregnant person needs the ability to be on bedrest for the remainder of the pregnancy.
“The moment the initial study on this procedure came out our team and our colleagues in Fetal Care Center knew this was something we had to pursue,” said Ozan Bahtiyar MD, director of the Yale New Haven Children’s Hospital Fetal Care Center. “We trained and studied and waited for the appropriate case to come along. For the right person at the right time this in-utero spinal-repair can give a baby the best possible outcome.”
Tianna had a support system, the ability to take the necessary weeks to recover and her baby’s particular case showed a positive risk-reward profile for this delicate procedure. When the day of surgery arrived, Tianna, then 26 weeks pregnant, felt prepared. “Everyone made me feel comfortable and informed.”
There were 22 people in the operating room including maternal fetal medicine specialist, pediatric neurosurgeons, pediatric surgeons, obstetrical and pediatric anesthesiologists, pediatric cardiologists, nurses, and an ultrasonographer, for the 4-hour surgery. Tianna remembers Eye of the Tiger coming through the speakers to lighten the mood before she was given a deep anesthesia to relax the uterus. It was opened with a technique to keep the fluid surrounding Savera intact and expose only what is necessary. In this case, the repair was needed in the lower spine where the spinal cord was outside the spinal canal and bowed out to attach to the skin. During the surgery the cord was separated from the skin and put into proper position. The hope is that the nerves then begin to repair.
Tianna was sent home to rest. Her outings were restricted mainly to doctor’s appointments. At 36 weeks, Savera was born via C section. “Seeing my daughter for the first time was pure bliss,” said Tianna, who was prepared for a long stay in the neonatal intensive care unit, but Savera was discharged after passing all her tests only four days after delivery.
Savera is now 17 months old and living in Michigan with her mom and dog named Odie. She loves to swim and paint. She speed-crawls, stands and enjoys her biweekly physical therapy sessions.
Tianna requested a video of the surgery that changed her family’s life.
“It was amazing to watch – I have to remind myself that it is me and my daughter on that table. “It was all worth it. Kids surprise you,” said Tianna.
About 1,500 babies are born each year in the U.S. with the type of spina bifida that Savera has, called myelomeningocele. Its severity is dictated by several factors including how high on the spinal cord the opening is located and the type of nerves that are exposed. The medical community is uncertain as to what causes spina bifida. The addition of folate in grains has cut the rate in half since the 1990’s. This research is still ongoing along with research around a combination of environmental and genetic risk factors.
Westport COVID-19 Cases Up 8 over Weekend; State Hospitalizations up 54, Positivity Rate Up to 5.25%
The Westport-Weston Health District reported 8 new COVID-19 cases for Westport over the weekend. The State’s daily test positivity rate was up to 5.25% while hospitalizations were up 54.
Westport total positive or probable cases: 2,209 cases.
Westport total COVID-19 Deaths: 32 deaths.
State Daily Test Positivity: 5.25% [up from 3.72%]
State Hospitalizations: 354 patients [+54]
Talking Transportation: Satirical Gift Ideas Perfect for the Jaded Commuter
Holiday Gifts for Commuters
Looking for the perfect holiday gift for a friend who misses their daily commute amid the pandemic? Consider an item from the exclusive Cameron Commuter Collection:
SCENTED CANDLES:
Nothing says the holidays like a fragrant candle to remind you of the old days of commuting. How about the “M2 Lavatory” scent to revisit the pungent smell of the railroad’s old bathrooms. Or the “Bar Car Memories” fragrance that smells faintly of stale beer and cigars.
For sports fans, there’s the “Yankee Express-ions”, which smells like sweaty baseball fans tailgating on their way to the game. Or the “Burning Brakes” scent that has just a hint of fried railcar asbestos brake pads. And who wouldn’t enjoy the “Dainty Diesel” candles to relive that great scent of exhaust fumes in the morning as you crawl down I-95, bumper-to-bumper, behind a spewing truck?
FAMILIAR FOODS:
If you miss snack shopping at Grand Central there’s the “Day Old Zaro’s Bagel Bag” filled with rock-hard baked goods. Or the “DD Delight”, a bag of month-old donuts found under my car’s front seat… stale, but surprisingly tasty.
HOME DECORATION:
Or how about a collection of old, graffiti-covered advertising posters from the railcar interiors. Maybe you’ll score the rare “If You See Something, Say Something” posters from the time when all we had to worry about were terrorists. And for the serious collector on your list, there’s a limited selection of salvaged 2 x 3 seats from the old, scrapped M2 cars, perfect for your rec room or man cave.
If you appreciate fine art chose the “Oh No SoNo Bridge” portrait showing the 125-year-old railroad bridge stuck in the open position on a hot summer’s day.
HIGH TECH:
Tired of your car’s GPS ‘voice’? Load our new “Roadway Romp” package that, no matter the real road conditions, offers a friendly voice keeps saying “no delays ahead”, bringing you peace of mind in any type of traffic.
And for real railroading nostalgia, check out the “Virtual Reality” metasphere bundle complete with 3D goggles playing a two-hour video loop of a crowded train ride with conductors collecting tickets while your commuter-neighbors jabber at high volume on their cell phones. Ah, such happy memories.
And brand new this year, a CD collection of the Yale Wiffenpoof glee club performing on the 5:45 AM train enroute to a concert in the city. You’ll smile ear to ear when the enthusiastic young a capella group does its renditions of such classics as “Silent Night”, right there in the Quiet Car, as shocked commuters try to catch a nap on the way to work.
COVID COLLECTION:
To commemorate our fight against the pandemic, don’t miss the “Metro-North Mask Mayhem” bundle, a hand-curated collection of slightly used face masks only worn once around the neck of the unvaxed. They’re guaranteed to be as fresh smelling as they day they were incorrectly worn.
There are no supply chain issues with the Cameron Commuter Collection, all domestically sourced, recycled, mold-removed and guaranteed to please the pickiest of your ex-commuter friends.
Happy holidays!
About Jim Cameron:
Jim Cameron has been a commuter advocate for over 30 years, with a special focus on the Metro North railroad. He spent nearly two decades on the Connecticut Metro North Commuter Council, and most recently founded The Commuter Action Group. Jim Cameron’s Talking Transportation was a popular column on the former WestportNow.com prior to its cessation, and joins The Westport Local Press and several other online community organizations. A resident of Darien - he serves on its Representative Town Meeting and is Program Director of the town government TV station, DarienTV79. He can be reached at CommuterActionGroup@gmail.com and follow him on Twitter: @CTRailCommuters
Morning Weather Report
Today
Mostly sunny, with a high near 43. Northwest wind 5 to 13 mph, with gusts as high as 23 mph.
Tonight
Mostly clear, with a low around 26. Northwest wind 5 to 7 mph becoming calm after midnight.
Tomorrow
Partly sunny, with a high near 40. Light west wind becoming southwest 5 to 10 mph in the morning.
Tomorrow Night
Mostly clear, with a steady temperature around 37. West wind around 6 mph.