Noblesville parents of child with NOMID encourage community awareness
As a nurse, Shannon Oisten had promised herself that she would never be a mom who took her child to the pediatrician for every cold and ear infection. But having a child diagnosed with Neonatal Onset Multisystem Inflammatory Disease, Shannon and her husband, Mike, have to keep a close eye on their daughter for a manifestation of the disease in either the onset of a rash or fever.
The first indication that all wasn’t well for little Morgan Oisten was the immense pain a simple thing, like changing a diaper, caused her. Mike said she shrieked in pain. Then a rash appeared all over her small body. The Oistens took her to their pediatrician who transferred them to the Peyton Manning Children’s Hospital in Indianapolis.
Once there, three-week-old Morgan was diagnosed with Omphalitis, a serious infection of the umbilical cord that attacks all the internal organs. Only half of a percent of children get Omphalitis, and the disease has a 50 percent mortality rate. Without any hesitation the doctor ordered she be sent into surgery within the hour.
“I was thinking, ‘We were just in a doctor’s appointment an hour ago, and now you’re telling me my daughter is going to die?’” Mike remembered.
While spending 12 days in the hospital, the doctors were looking into the rash that had developed all over Morgan’s small body. Even after tests, the doctors couldn’t pinpoint the cause. Experts at Riley hospital connected with the National Institutes of Health in Maryland.
By the time Morgan was eight months old she was diagnosed with NOMID. Two months later, NIH began treating the disease with Kineret, a daily injection that staves off the genetic inflammation of the spinal fluid. Once Morgan began receiving treatments, the rash disappeared.
NOMID is a rare disease. Only one in a million people have been diagnosed with it. Mike said there is one other girl in the entire state of Indiana who has the same disease. Without the treatment NOMID can cause mental retardation, loss of sight and hearing, and an also affect the growth of the legs.
Morgan was spared any serious repercussions usually caused by NOMID because of the early detection. As more doctors understand the symptoms, the better they can diagnose it sooner and the disease can be kept in check.
“The doctors said [Morgan’s] legs were never going to be straight,” Mike said of his four-year-old daughter who now is walking. “Inside that shell is a wreck, but she’s doing fine.”
Don’t let the devastating possibilities of the disease create the assumption that Morgan is a mild child. At her last appointment she met a new doctor. After reading Morgan’s history, Shannon said the doctor had expected to see a frail little girl. But there was Morgan ready to sit in the doctor’s lap and talk.
Morgan also cares about those who are hurting or suffering from diseases. Mike recalled a moment when Morgan approached a girl with a deformed leg. Without hesitation she placed her hand on the girl’s leg and asked, “What’s wrong with your leg? Are you going to be ok?”
Due to NOMID Morgan is built much smaller than her peers, but otherwise she looks like any other child. According to her charts, she falls probably a year behind other four year olds.
“Her bone density is equal to that of a two and a half or three year old,” said Mike. “She’s a little more wobbly than others, but she can still climb ladders and do other things.”
In spite of limiting physical capabilities, she is in a tumbling class given by the Noblesville Parks Department. Her favorite activity she calls “climbing the rock wall” is an activity similar to a wall handstand.
“Because she’s doing so well I don’t have fears like I did that something is going to go wrong,” said Shannon. “I just have such a great faith that the medicine is awesome and that she is going to do well with it.”
While the Oistens appreciate the support of friends and coworkers in the community, there is very little awareness of the disease. Their hope is that a recent fundraiser for Morgan and another little girl, Henley Romine of Carmel, put on by two Westfield girls, Peighton Isley, 9, and Olivia Johnson, 10, would spread the word about NOMID even further.
The money received from the fundraiser will be donated to the NOMID Alliance, a nonprofit that funds research for autoimmune diseases. Due to possible funding cuts to federal agencies, NIH could face a loss in grants that fund research.
As the family has visited NIH over the past few years, they’ve been involved in NOMID research studies. A diary is a normal part of being in a study. Shannon takes the daily chore, recording temperature, headaches, ear infections and other details.
Having just returned from a trip to NIH earlier this month, Morgan was involved in a study to test a drug that could potentially stave off NOMID. If the FDA approves the drug, then the Oistens will not have to return for a year, but if the drug is not approved, they will return after six months. Results will be known by the end of the year.
“There’s still a lot that I don’t understand completely, but everyone at the NIH is really great about explaining things to us,” said Shannon. “We really have easy access to the doctors.”
Donations to NOMID Alliance can be made online by visiting www.nomidalliance.org/support.php.
What was the H&M Event?
When: Oct. 19
Who: Peighton Isley, 9, and Olivia Johnson, 10, planned the event on their own initiative. They started planning the event in late spring and rallied family and friends to make the event happen.
Where: Oak Manor Clubhouse in Westfield
Why: The event honored two younger girls that are fighting equally rare diseases.
The “H” stood for Henley Romine of Carmel who was diagnosed with stage IV High Risk Neuroblastoma in August 2010. The “M” was for 4-year-old Morgan Oisten of Noblesville. Diagnosed at 8 months with Neonatal Onset Multisystem Inflammatory Disease, Morgan is one of two Hoosiers fighting the disease.