Reporting Susan-Elizabeth Littlefield
MINNEAPOLIS (WCCO) – At the moment, 2-year-old Lydia Kohler is sailing through life. But her mother, Anna Kohler, says Lydia’s life was at a standstill last year.
“[We thought] this could be the last time we, I don’t know, put her to bed – and that was really scary,” Kohler said.
The blood in Lydia’s brain started flowing into a cavity, a pouch that ballooned in her head. Lydia’s condition stopped two young University of Minnesota doctors in their tracks: Dr. Bharathi Jagadeesan and Dr. Andrew Grande.
“We did know about these conditions from our training, but it’s one of those things you learn and never expect to see,” Dr. Jagadeesan said.
There are only about 100 cases on record of dural sinus malformation anywhere in the world.
Jagadeesan and Grande, both two years out of training, had to figure something out fast because the bleeding and pressure can stop a child’s breathing, and Lydia’s heart was starting to fail.
“We tried all the conventional approaches and failed, then we really had to think out of the box and come up with this new approach,” Dr. Jagadeesan said.
After assembling a team of U of M doctors at Amplatz Children’s Hospital in Minneapolis, they decided to fill the pouch with Super Glue to stop the bleeding – a first time experiment. They traded off turns and kept going till the bleeding stopped.
It was a success, but a precedent Dr. Jagadeesan did not want to set.
“I said, ‘Well I don’t really want to see another kid with the same condition, and I don’t think I will because it’s so rare,’” Dr. Jagadeesan said. “We were surprised within six months, we saw another baby with the same condition.”
In Plymouth, Niki Bahl’s daughter, Gracyn, was just one day old, but her life was in grave danger.
“It was at our 20-week ultrasound we actually found out there was something wrong,” Bahl said.
That ultrasound showed formations that the two doctors never thought they’d see again. But the Bahl family had hope because of what had happened to the Kohlers.
A day after Gracyn was born, the doctors repeated the technique they’d perfected on Lydia.
“That really did help Gracyn’s case where we really could straight away go to what we thought would work for her,” Dr. Jagadeesan said.
The bleeding stopped, and Gracyn survived.
“She’s a hard worker. We go to occupational and physical therapy every week,” Bahl said.
It’s a process only one other mother could fully understand.
“There was a purpose for her being sick and it was Gracyn, so that’s pretty awesome,” Kohler said.
And on a summer day on a playground, without exchanging words, two little girls touched as their mothers met for the very first time.
“To see their little girl running around walking and talking, it gives you a little more hope that Gracyn’s on her way to hitting that level,” Bahl said.
Since the surgeries, Jagadeesan and Grande have spoken at several conferences and have yet to find another doctor who has dealt with two cases.
The prognosis for Lydia and Gracyn is good. Developmentally, time will tell.