Connecting with others helps parents take even-keeled approach to baby’s neurological condition
Author: | August 19, 2019
Mason Christofferson was born almost two months early in January 2019. As they were preparing to leave the Neonatal Intensive Care Unit in a Duluth, MN, hospital, the care team told Mason’s parents, Jen and Brian, that his head was growing too fast.
“They did a CT scan and saw that he had hydrocephalus,” said Jen. “They sent us down to Minneapolis and he started seeing Dr. [Carolina] Sandoval, [pediatric neurosurgeon at University of Minnesota Masonic Children’s Hospital]. They did an MRI at the hospital to determine how bad the hydrocephalus was and told us he would need a shunt.”
Hydrocephalus is a relatively common condition (one out of 1,000 babies are born with it) in which excess cerebrospinal fluid (CSF) builds up within the ventricles (fluid-filled cavities) of the brain. CSF typically flows through the ventricles and bathes the brain and spinal cord. The pressure caused by too much fluid can damage brain tissues and cause a range of brain function impairments.
“Premature babies may experience a spontaneous hemorrhage in the perinatal period, which eventually affects the normal circulation of cerebrospinal fluid in the brain,” Sandoval explained. “When that bleeding occurs and depending on its severity, there are different ways it affects certain functions, such as fluid circulation and reabsorption so it accumulates in the ventricles.”
She noted that the severity of hydrocephalus can vary – depending on the cause – whether it’s premature birth, infection or anatomic abnormality. While Mason’s condition was less severe than it could have been, he needed a way to remove the excess CSF from his brain. One of the standard treatments for hydrocephalus is to surgically implant a shunt in one of the ventricles to divert the cerebrospinal fluid to another part of his body.
When he was just three weeks old, Sandoval performed that procedure on Mason. With young babies, surgery of any kind can be challenging; however, “Hydrocephalus enlarges the cavities we’re trying to drain and gives us a much bigger target,” noted Sandoval. “It somewhat offsets the typical difficulty of navigating smaller structures in a baby.”
“The surgery went really well,” said Jen. “The first day after the procedure was a little rough when Mason came off the pain medication, but other than that, he did great.”
When they were finally able to return home, Jen and Brian kept a close watch on Mason to make sure the shunt was working correctly. “In babies, we have a clear window to their intracranial situation because their fontanelle [soft spot] is still open,” Sandoval said. “Parents have that visible indicator and if the fontanelle is tense or fuller than usual, along with other signs, it can be an indication that the shunt isn’t working.” Symptoms of shunt failure could include lethargy, altered mental status, fuzziness, and vomiting.
Jen and Brian did have a scare that made them take Mason back to the U of M in March. “We didn’t realize that if a baby is constipated, the shunt might not work properly,” Jen said. “That was his issue.”
During a May 2019 follow-up with Sandoval, “She determined his shunt wasn’t working properly and did a revision surgery,” said Jen. “That went great and we went home the following day.”
Fewer revisions than before
While the introduction of ventriculoperitoneal shunting has changed the natural history and prognosis of hydrocephalus, as with any man-made device, revision surgeries might be needed, according to Sandoval. “Especially when we do this procedure at an early age, it’s statistically possible that there could be an obstruction, a malfunction, or a disconnection at some point throughout a patient’s life,” she noted.
Right now, having a shunt can be a lifetime commitment because treating hydrocephalus depends on it working well. “Techniques have advanced enough with newer and better catheters, valves, image guidance and better placement techniques that we revise far fewer shunts than before,” said Sandoval. “We also have newer procedures. For example, when Mason is older, he might be a candidate for an endoscopic procedure, which for some patients is our first choice. If he has a malfunction in the future, and if his anatomy allows, we could use such a procedure and if successful, he might not need a shunt again.”
In the meantime, Mason’s parents monitor him closely. “We’re always feeling his soft spot to ensure that it is staying soft,” said Jen. “He’s not a big crier, so when he does, we tend to panic. But then we tell ourselves he’s fine.”
Mason went in for his six-month appointment on July 16. “Dr. Sandoval was thrilled to see how awesome he’s doing,” said Jen.
The Christoffersons have some advice for parents newly adjusting to their child’s hydrocephalus. Jen said, “Try not to panic. Call your doctor if you have questions. When we have questions, Dr. Sandoval is insanely smart but dumbs her answers down enough so we understand. She doesn’t make you feel dumb in the process. It’s great.” Sandoval laughed at Jen’s characterization of how she counsels her patients’ families. “I try to be very aware of the words I use when I’m speaking to parents and use terms and analogies that are relatable,” she said.
"Don't Google stuff"
Jen also advises parents to try and stay off hydrocephalus-related Facebook pages. “Don’t Google stuff,” she said, adding, “find actual people who are in the same situation. We had a lot of luck running into people at the U who had direct experience with hydrocephalus. Now that we know about it, hydrocephalus is around us much more than we thought.”
To expand their community even further, the family is going to participate in the WALK to End Hydrocephalus, September 21, 2019, in Rosland Park of Edina, MN. “We’re really excited to meet other families there,” Jen said.
Perhaps the most difficult challenge Jen and Brian face is that people don’t understand Mason’s condition. “We found we needed to educate people, especially our family and friends, about the fact that Mason can live a completely normal life, despite his shunt,” she said.
For more information about the Twin Cities WALK to End Hydrocephalus.
For more information about hydrocephalus treatment at the U of M Masonic Children’s Hospital, call 612-624-6666.