|Wed, Sep 03, 2014 12:46 AM
April 02, 2014 | 09:45 AM
A New Albany couple with roots in Harrison County have been on an emotional roller coaster since the birth of their first child earlier this year.
Everything seemed fine when Thomas Wayne Norris was born to John (J.P.), a North Harrison High School graduate, and Katherine Norris in late February and when they took him home from the hospital.
John (J.P.) Norris looks on as wife, Katherine, holds their son, Thomas Wayne Norris. Thomas suffers from a mitochondrial disorder. Photos submitted by Angel Losiniecki (click for larger version)
However, all that changed a week later during a routine check-up, and the Norrises have watched their baby son fight for his life ever since.
During that one-week check-up, Thomas' body temperature was lower than normal so the pediatrician asked the Norrises to bring him back in a few days so he could be checked again and make sure everything was OK. When they did, Thomas' weight and body temperature was fine, but his mother thought he was breathing a little different and the doctor agreed and gave him treatment before sending him to Kosair Children's Hospital in Louisville for further evaluation.
"Once they arrived at Kosair, Thomas was taken for his X-ray, where they found his heart was enlarged," Angel Losiniecki, J.P.'s sister, said. "At that point, it was just said that this was probably nothing to be worried about, but they would keep him over the next 48 hours just for observation.
"Forty-eight hours turned into what's going on a four-week stint in the CICU," she said.
After tests and consults, it was determined that Thomas was suffering from dilated cardimyopathy. The left bottom portion of his heart was enlarged and was only operating at about 30 percent when it should have been 60 percent for a one-week-old baby.
It was Friday, March 7, when he was admitted to Kosair, and, by Monday, March 10, he was on a ventilator to assist him so that he didn't have to work so hard to breathe. Later that day, it was decided that Thomas would be transferred to St. Louis Children's Hospital because he could receive a transplant there once a donor becomes available.
"A transplant? Needless to say his parents were devastated as were we all," Losiniecki said. "There were not a lot of answers as to what had caused this. Nothing like this ever showed up on Katherine's prenatal ultrasounds, so this didn't make sense."
On March 11, Thomas and the family made their way to St. Louis, where they have remained. After passing a number of tests for heart transplant eligibility, on March 21, Thomas was placed on the inactive transplant list because something on the genetics test came back abnormal. The preliminary results had shown that possibly Thomas was suffering from a mitochondrial disorder. The mitochondria make up of his cells don't generate energy to sustain his muscles, including his heart.
The doctors in St. Louis decided to move in a direction to treat Thomas' deficiency with a drug cocktail. The official results of the testing could take up to 72 days to return.
After Thomas began taking the medications, his breathing tube was removed and his parents were finally able to hold him again for the first time since leaving Kosair, Losiniecki said.
Since then, Thomas no longer is on any type of oxygen support, has no IVs taking up space in his arms, no arterial lines inserted in his legs and has been slowly weaning off of pain and heart maintenance medications.
"Thomas can hear his own voice now, and his parents are able to hear their sweet baby's cries," Losiniecki said.
A website has been created, www.gofundme.com/heartofthomas, to help the family pay for medical bills.
"The outpouring from the community has been happily overwhelming," Losiniecki said. "Thomas has received financial support from people he'll never meet, nor will his parents. The prayers that have been said for this little guy come from thousands of miles all around the United States, and we can say each one of them have touched us in a way we'll never be able to show gratitude for."
To send funds for Thomas, dubbed "little Batman," visit the above website or send to P.O. Box 403, New Albany, IN 47150.
Thomas' treatment for mitochondrial disorder will be a lifelong journey.
After graduating from North Harrison in 2000, J.P. enlisted in the Air Force following 9/11 and was stationed in California, where he met Katherine. They were married in May 2011.