Life in Circles: Unexpected blessings.

June 25, 2016
Stephanie, Steve and Mallie.

Stephanie, Steve and Mallie.

#MasonCountyPeople #LifeInCircles

Life In Circles by Stephanie Wagner.

Sponsored by Pro-Master Carpet Cleaning, 231-757-9061, promastercarpetcleaning.com.

It is truly heartbreaking to watch a young child suffer; their pleading eyes full of pain and fear, their language not developed enough to understand or talk about what is happening in their tiny bodies.

Parenting takes strength, and parenting a sick baby takes a superhero.

When Stephanie Stakenas married her high school sweetheart at the age of 24, babies were the farthest thing from her mind.

“We weren’t in a big hurry to be parents.  We were 15 when we got together, 24 when we got married, and then waited another eight years before Mallie was born.  I didn’t know anything about babies – I never really babysat, and I was honestly a little scared of my nieces and nephews when they were tiny.

When I found out I was pregnant, I cried. It was super scary and exciting all at the same time.”

promaster 111813Stephanie followed all the rules of early pregnancy, including regular prenatal visits and testing.

“Because I didn’t know a lot, I didn’t ask a lot of questions. When the doctor recommended the Quad Testing, I just followed directions and did it.”

That test was the first sign of trouble.

“They told me that there was a high probability of a genetic syndrome, but they couldn’t be sure. I was referred to a specialist in Grand Rapids, and when they did the ultrasound there, Mallie was measuring small.  They thought my due date was wrong because everything else looked normal. “

The next 18 weeks would be a waiting game for Stephanie and husband, Steve.

“I knew my due date was right, but when they wanted to do further testing, I refused it. It wouldn’t have changed anything. So, from that point on – 20 weeks – we knew that something may be wrong, but we had no idea what. I kept saying she is just small, I am small, what do they know?”

Mallorie Jean Stakenas entered the world September 10, 2009 full term, but weighing just 4 pounds, 4 ounces and only 16 ¾ inches long. Her umbilical cord was unusually short, and her early APGAR (newborn screening test) scores were concerning.

Mallie spent her first week in the natal intensive care unit (NICU) at Helen DeVos Children’s Hospital in Grand Rapids, but was then cleared to go home.

“We still had no idea what – if anything – was wrong other than she was really small.  She had failed her initial hearing screening at DeVos, so we followed up in Ludington but Mallie did not cooperate.   When we had it re-checked at the local ENT, she passed in both ears.  We never thought another thought about it.

“My sister had a baby about a month before I had Mallie. When we got together at Thanksgiving, I noticed some things that made me think maybe Mallie was a little behind developmentally.  I started researching and googling things.

“By March, mother’s intuition and some hard conversations with my sister Dawn pushed me to dig deeper.   

“She was still behind and very small, and she looked ‘different’ to me. I started doing my own research, and asking a lot more questions.  

“I had started googling, and that is when I found out about Russell-Silver Syndrome. There is no real test for it – yet – and all that can be done is to treat the symptoms. But it was Mallie.”

Russell-Silver Syndrome is a rare genetic disorder that can cause low birth weight, slowed post-birth growth, feeding difficulties, gastrointestinal disorders, and motor, speech, and/or cognitive delays.   People with RSS have a typical head size, and may also share certain facial features such as a triangular shaped face with a prominent forehead.

“We were referred to a neuro-developmental pediatrician when she was about 7-months-old. From that appointment on, it was test after test, and specialist after specialist. We had MRIs, X-rays, an upper GI, and another special hearing test.   She had low muscle tone (hyptonia), was still very small, and had constant constipation.”

The additional testing showed moderate brain damage, as well as profound hearing loss in both ears. Mallie also had a condition called malrotation of her intestines, meaning that her intestines did not make the final turn.

“I was in shock. You could have punched me at that point and I don’t think I would have felt it. “

Mallie’s first surgery was scheduled to fix the malrotation. She recovered well, but shortly after, suffered a bowel obstruction as a complication and required additional surgery.

“That first year was rough. Mallie had multiple surgeries, and endless doctor’s appointments. I honestly don’t know how I made it.

“We spent her first birthday in the hospital after surgery recovering from the obstruction.  We were there 18 days, and the day we came home, my dad passed away unexpectedly. I was devastated.

“I had to learn fairly quickly how to be an advocate.  We are constantly trying to figure her out.  Before this experience, I would never make small talk with people in the grocery store, or question doctors, or do my own research.  Mallie changed everything.”

Since that first year, Mallie has grown into a happy, thriving 6-year-old. She just finished Kindergarten at Scottville Elementary, and is excitedly looking forward to 1st grade in the fall.  Stephanie attributes that to a regiment of healthy living (she is a sales coordinator for Juice Plus, a fruit and vegetable whole food based supplement line), strong advocacy, and a team of both holistic practitioners and traditional medical treatments.

It isn’t always easy she freely admits.

“Mallie got cochlear implants when she was 18 months old. When we were scheduling, we had to fight the surgeon to do them both at the same time. She had already been through multiple surgeries and hospital stays, not to mention that the insurance company insisted we try hearing aides first. Then because we have a special insurance supplement for her, we had to fight their rules too. We finally got it to go through, and it was definitely the right choice – but it took a lot of effort.”

It is a journey that has changed the whole family, and one that Stephanie wouldn’t trade.   

“Our whole family is healthier. And I am much more brave than ever before.

“Telling Mallie’s story, sharing our lifestyle changes, speaking up and out even when I am afraid to – I really felt like I had no voice before, and now I do. Everyone does. We just have to find it.”

What was once lost, is now found. Our children often show us the path to bravery, especially when they are at their most vulnerable. In speaking for the voiceless, we find our own.

Say it loud, and say it proud. Your daughters are listening.

 

#MasonCountyPress

 

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