Miracles Do Exist- Jonah’s Journey and Omphalocele Awareness

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By Nolan P. Smith

Photos by Kelly Kilimnik

High Desert Daily

(Victor Valley)—A miracle is defined as an example of wonder, an act of God. There is no better word in the English language to describe 20-month-old Jonah Flynn Kilimnik.

The young Apple Valley resident was born with a birth defect called Omphalocele, making the odds stacked against him from the very beginning. In speaking with his mother, Kelly Kilimnik, I learned of the overwhelming odds Jonah has overcome, the strength of the entire Kilimnik family, as well as the power of music by Coldplay.

Kelly's iPhone pics and videos 381

Pronounced uhm-fa-lo-seal, an Omphalocele is an abdominal wall defect that is a herniation of intestines and often times other organs into an opening of the abdominal muscles in the area of the umbilical cord. According to the Centers for Disease Control and Prevention (CDC), it is estimated that each year about 775 babies in the United States are born with an Omphalocele, which translates to about 1 out of every 5,386 babies born in the United States each year.

There are varying sizes of Omphaloceles, Kelly explained, “it goes by small, large and giant. Small is just where a small portion of the intestine protrudes out and is really easily fixed after birth. Then there’s the large Omphaloceles, where nearly all of the intestines and some organs are. The giant Omphaloceles are classified if whether the liver is in the sack or not. So if the liver is in the sack, it is considered a giant Omphalocele, like Jonah’s. His surgeon said that when you are comparing apples to oranges, he’s a kiwi.”

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One of the therapies that Jonah has really reacted positively to is music therapy. Kelly told us about how the music soothes him, and how he instantly fell in love with the music from Coldplay.

“We did a lot of music therapy with him. His music therapist has been seeing him since he was 2 weeks old. She would come in and play her guitar and sing to him. They have done studies on babies in the NICU on music therapy and how beneficial it is to them. It is lowering their heart rate, it is stabilizing their stats, just in that peaceful environment. The music therapist worked with us: me, my husband and Parker (Jonah’s brother), she recorded our voices so Jonah could listen to them. We were able to bond with him through music.”

How was Coldplay’s music introduced to Jonah?  “I never listened to Coldplay during pregnancy,” said Kelly. “I was holding him and listening to music on Pandora and a Coldplay song came on and he stopped everything he was doing and just listened to Coldplay, and every time Coldplay would come on, he would just stop what he’s doing and listen, and eventually that would be the only thing that would calm him down, so his music therapist put Coldplay on an MP3 player for him so he could listen to it all the time.”

As I watched Jonah begin to grow restless in his highchair, I needed to see for myself the power of music. I pulled out my phone and put a random Coldplay song on. I watched as Jonah stopped what he was doing and simply looked at me and my phone, and then a smile swept over his face. Pure joy could be seen as he moved around to the music of the song “Paradise” and even mouthed the words a bit. It was a sight I had never seen before: it was proof that if even little Jonah, who has been through so much in his life already, can smile and enjoy the moment, then I think we all can, and should.

As mentioned earlier, Omphaloceles are a rare occurrence, but one that is becoming more and more common as the years go by, which is a reason why Kelly is such a supporter of creating awareness for this birth defect. “It happens 1 out of every 5,000-10,000 live births,” said Kelly.  “Interesting enough, the rates of Omphalocele births are going up every year, especially extreme cases like Jonah’s and they don’t know why. There’s not enough research done on why.”

January 31st is Omphalocele Awareness Day, as people across the nation will wear black and white to show their support of raising awareness. With more awareness, more studies can be conducted, which means the world will get closer to pinpointing the causes of Omphalocele births. You can share your pictures of Omphalocele Awareness Day and learn more about Jonah on the Jonah’s Journey Facebook page, https://www.facebook.com/pages/Jonahs-Journey/354133524615168 or on Instagram and Twitter by using the hash tags #jonahsjourney and #OmphaloceleAwareness.

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By Teresa Bianch

 

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