Benefit set for ‘Happy baby’ with Spina Bifida

Kennedy Van Zee looks and sounds like any other baby girl.
“She’s a happy baby,” Kennedy’s parents Brian and Heather Van Zee exclaim.
Kennedy has had only a few outbursts of crying since being born September 21. She loves to snuggle and hug. She eats like there’s no tomorrow.
Her proud father can reel off those important baby facts with a smile – and without stopping to think about them: She was 8 pounds, 1.8 ounces at birth and born at 8:18 a.m.
Kennedy might sound like any other baby, but she’s not.
The dark haired, blue-eyed baby girl was born with Spina Bifida and Hydrocephalus – two birth defects that have the Van Zees worrying more about today than wondering about the future.
Kennedy has had to undergo many extensive surgeries in her short six weeks of life. As surgeries have mounted, so have the medical bills related to little Kennedy’s care.
To help Brian and Heather, friends and relatives are hosting a benefit for the family from 3-7 p.m. on Saturday, Nov. 19 at the Community Christian School in Pease.
A meal will be served and there will be silent and live auctions. There will be a kids area with games and crafts, Heather said.
T-shirts honoring Kennedy will also be sold at the benefit. They will having sayings like “Spina Bifida Warrior” and “Little But Fierce.”
The diagnosis
Brian and Heather Van Zee were pretty excited to be expecting their first child.
Brian, a teacher at Community Christian School, and Heather, a public defender based in Milaca, went to all their doctor appointments – including their 20-week appointment in May.
Heather had a routine ultrasound that day. However, the results were anything but routine. The ultrasound suggested their child had a hole in her spine and fluid on her brain, Heather said.
Brian and Heather left the doctor’s office in shock. They left the doctor’s office with a lot of educational materials on Spina Bifida and Hydrocephalus and an appointment with a specialist in the Twin Cities.
“Friday we were seeing our doctor in Princeton and by Tuesday we were seeing a specialist at the University of Minnesota Masonic Children’s Hospital in Minneapolis.
It was a tough weekend for Brian and Heather.
“We cried a lot, and prayed,” Heather said. Brian and Heather also called the prayer chain at their church.
They went to a Minnesota Twins game over the weekend to help clear their minds a bit.
But on Tuesday, speculation became reality at the Masonic Children’s Hospital. Specialists confirmed the baby suffers from Spina Bifida and Hydrocephalus.
Spina Bifida and Hydrocephalus
Heather took early maternity leave and spent much of the summer residing with a relative so she could be closer to the Masonic hospital.
There was no special care the baby could receive prior to her birth, so the Van Zees spent time learning about the diseases.
Hydrocephalus, according to Wikipedia, is a condition in which there is an abnormal accumulation of cerebrospinal fluid (CSF) within the brain. This typically causes increased pressure inside the skull. Hydrocephalus is typically treated by the surgical placement of a shunt system.
Spina Bifida, with means “Split Spine” in Latin, is a birth defect where there is incomplete closing of the backbone and membranes around the spinal cord.
In Kennedy’s case, specialists determined she suffered a severe case of  Spina Bifida. The opening in Kennedy’s back was quite large and covered the entire lumbar and sacral regions.
Living with encouragement
The last half of Heather’s pregnancy was full of uncertainty.
“It was really scary. Our minds were going everywhere,” Heather said.
That was, in part, because Brian and Heather wouldn’t know the severity of their daughter’s birth defects until she would be born.
Kennedy’s due date was Sept. 28, 2016, but she was born a week early by C-section on Sept. 21.
To date, it appears that prayers directed in Brian, Heather and Kennedy’s direction have made a difference in the little girl’s life.
Kennedy has been breathing on her own since she was 15 hours old, Brian said. Doctors believed breathing on her own might be a challenge for Kennedy.
Kennedy’s cognitive skills appear to be good, her parents said, and a shunt installed to remove water from her brain is draining properly.
She’s like other babies, but has a catheter installed to help her in going to the bathroom.
When it comes to mobility, doctors cautioned the Van Zees prior to Kennedy’s birth that she might not be able to move her legs.
“But she’s kicking both of them well,” Brian said.
None of Kennedy’s nerves were damaged in the process, either, Heather said. That includes nerves that were outside Kennedy’s body, she said.
“Thank God, our prayers have been answered,” Brian said.

 

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