Noteworthy cause

Noteworthy cause

CHAMPAIGN — Like most expecting parents, opera singers Jason and Nicole Morgan were aware of all that could go wrong when giving birth.

However, they were stunned shortly after their son, Maxwell, came into the world to discover that babies, even unborn babies in utero, can have strokes.

That's apparently what happened to Maxwell. Within 24 hours after his birth on April 6, 2012, at Carle Foundation Hospital in Urbana, Maxwell began having seizures.

"His oxygen level crashed, among other things," said his dad, who at the time was holding his newborn son in his arms.

Maxwell is doing well now, thanks to early detection and treatment and later help from therapists and organizations, among them the Children's Hemiplegia and Stroke Association, also known as CHASA.

The Morgans, who live in Champaign, want to give back. They and their friends have organized a benefit concert for CHASA: "Hear Our Song: A Benefit Concert for Pediatric Stroke Awareness" will be at 7:30 p.m. Friday at Faith United Methodist Church, 1719 S. Prospect Ave., C.

It will feature the voices of Jason and Nicole Morgan, a tenor and soprano. Both have master's degrees in vocal performance from the University of Illinois.

Friends from the local theater community also will perform: April and Andy Blacker, Jeff Chandler, Kari Croop, and sisters Monica Samii and Nina Samii Frye. Pianist Dan McCue and guitarist Andy Croop will accompany.

The vocalists will sing selections from a variety of genres, including songs the Morgans and other parent-singers use as lullabies. And Jason Morgan will perform the hauntingly beautiful "Bring Him Home" from "Les Miserables."

All of the proceeds from the benefit concert will go to CHASA, a nonprofit group that funds research, scholarships, family retreats and other outreach efforts. None of the proceeds will go to the Morgans, who have good health insurance and feel they have benefited from CHASA's Central Illinois support group.

Jason Morgan, 42, works at home as a senior network architect for an international law firm based in Boston and teaches voice at Millikin University to high school students. Nicole Morgan, 32, is an adjunct voice professor at Millikin University in Decatur.

Before giving birth to Maxwell, Nicole was diagnosed with cholestasis, a rare liver disorder that doesn't affect the mother but can cause a stillbirth after 37 weeks of pregnancy. So labor was induced at 36 weeks.

"It was a pretty intense labor and delivery," she said.

Maxwell seemed fine at first, weighing in at 6 pounds, 11 ounces. After he began having seizures, doctors ordered a CAT scan. It showed swelling in his brain.

To reduce that, Maxwell was sedated with phenobarbital, which basically knocked him out for two days, his dad said.

After the swelling subsided, Maxwell was given an MRI. It showed damage to the central part of the artery on the left side of the brain, and that caused damage to his right side.

He remained in the neonatal intensive care unit for 10 days. Six months after going home, he started having infantile spasms, which were not necessarily related to the stroke.

Infantile spasms are a multiple-seizure disorder that can lead to permanent brain damage or death. To control them, Maxwell was given steroid shots in the leg twice a day for two months.

The steroids made him retain water and gain weight.

"He was our Cabbage Patch Doll," said his 11-year-old sister, Julia.

The steroids also increased Maxwell's blood pressure problems and suppressed his immune system. He came down with an ear infection and dehydration. He had to overcome other health challenges, and during his first year of life had five major hospital stays.

He now sees four therapists, among them one for vision because the stroke caused significant "field cuts," or vision loss, on the right side of each eye.

"That's the last bad news we had," Jason Morgan said. "We're now down to one maintenance medication. He was on six altogether."

Other good news: Maxwell has been seizure-free since Thanksgiving. He recently started sitting up and "arm crawling." He can speak words that most babies utter: mama, dadda, no, boo.

The Morgans feel lucky their son's stroke was discovered soon after his birth. Many times a pediatric stroke is not detected until the child is 10 months to 2 years old.

Pediatric strokes can occur before birth, but it's unclear how often, according to CHASA. In children, they occur at the highest rate in infants younger than 1 month — at a rate of about 1 in 2,800 live births.

More than 85 percent of babies who had strokes live to adulthood. From 50 percent to 80 percent of babies and children who had strokes will have long-term challenges such as one-sided paralysis, seizures and speech, visual, behavioral and learning problems.

Maxwell has no apparent paralysis but wears kinesthetic bands around his right wrist and upper arm to make him use his right-arm muscles. At 14 months old, he's happy and an easy baby who sleeps well at night, his parents said.

The big question mark is his future development and health.

"The incidence of another stroke is higher for children who have had one," Jason Morgan said. "You cross your fingers and you watch the developmental markers go by, and you celebrate each one. It's definitely a day-by-day situation."

If you go

What: "Hear Our Song: A Benefit Concert for Pediatric Stroke Awareness," featuring vocalists Jason and Nicole Morgan and other local singers and musicians, with a silent auction and bake sale

When: 7:30 p.m. Friday (doors open at 7)

Where: Faith United Methodist Church, 1719 S. Prospect Ave., C

Admission: $15 for adults and $10 for senior citizens 65 and older and for children younger under 13 (cash and credit cards will be accepted at the door)

Note: All proceeds will go to the Children's Hemiplegia and Stroke Association (http://www.chasa.org).

Sections (2):News, Local
Topics (3):Health Care, Music, People

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