Miracle baby: The incredible story of Elijah Leffingwell
Fundraiser benefits Mequon boy
Mequon — During the first year of his life, Elijah Leffingwell didn't eat like most babies. That's because Elijah isn't like most babies.
At meals, bottles were replaced with syringes. Instead of chewing and swallowing, there was a feeding tube.
Now at the beginning of the second year of his life, Elijah is eating like other children — a huge victory for a baby whose life has been one insurmountable obstacle after another.
Jason and April Leffingwell had only been living in their new Mequon home for two months when they found out their unborn child had an orange-sized tumor growing on his left lung that was crushing his right lung and heart. Elijah's bedroom didn't even have a crib in it when the Leffingwell's left their new home with their then 2-year-old daughter, Ellianna, in tow, and moved to a Ronald McDonald house in Camden, NJ, where they stayed for five months.
Elijah's only hope fell in the hands of a surgeon at Children's Hospital of Philadelphia. With a 50 percent chance of survival, Elijah underwent a radical, and rare, surgery. On Sept. 21, 2012, at 25 weeks, Elijah was partially removed from April's womb. He was only 2.5 pounds. Midway through surgery his heart stopped. The doctors massaged it back to life and Elijah went back inside his mom's womb.
He survived, but the battle for his life was just beginning.
At 29 weeks, the doctors realized Elijah's diaphragm was accidentally cut during surgery, causing a hernia. While still in April's womb, his stomach went into his chest and ruptured. His left lung collapsed.
"Every day I cried, because I didn't know if my baby was going to live. It was a journey you have to fight through because you had to," April said. "It's unbelievable. God has a special plan for this little kid."
Elijah was born — for a second time — on Nov. 19, 2012, at 33 weeks and six days old. The first nine days of his life were spent on life support and another 62 were in an incubator.
Elijah is a miracle. His parents are fighters. Jason and April fought by his side from day one. April calls Jason her rock. Jason's rock is God.
"I had to give it all to him. I just trusted that God would lead us through this," Jason said.
Elijah underwent two more surgeries before the family was able to return home. One surgery wrapped the top of his stomach around his esophagus to help stop food in his stomach from painfully refluxing. The second put a hole and tube in his stomach. That's how Elijah has been fed — until now.
"Right now our life is bliss. We're happy. My daughter is happy. It's like black and white —night and day," April said. "It's a beautiful Christmas gift that we got. Last year we were in the NICU and now we're home. This kid is a miracle."
One step at a time
The Leffingwells came home in January where they were greeted by unpacked boxes and a flooded basement. Still, they moved forward.
"It was a trial. Events we had to push through," Jason said. "We just have to keep putting one foot in front of the other and pick ourselves up when we need to and keep pushing forward and you have to do that with the whole family."
For months, April and Jason's lives have been one doctor's appointment after another. Their Mequon home was a revolving door for therapists. As of this week, their lives have one less therapist in it.
Family meals are a lot simpler now. Wednesday marked the second week in a row Elijah ate without a feeding tube. He weighs 15 pounds, 12 ounces.
As many people were having second helpings on Thanksgiving, Elijah's food portion was being cut by 10 percent. His portions were ultimately cut in half when the Leffingwell's left for Alexandria, Va., in the beginning of December so Elijah could participate in a hunger-based weaning program to learn how to eat with his mouth.
"It's a really vicious cycle," April said. "The reason is because kids can't get off of their feeding tube when they are tube fed because they don't get a chance to get hungry because we're on a schedule and we have to plug him in and feed him."
A step toward a normal life
The procedure is not widely used in the U.S. In fact, it is considered experimental and the Leffingwells worked with a doctor who flew in from Germany. The therapy succeeded.
Though Elijah could face future medical issues, he can also live a normal and healthy life.
"It's just a great step forward. We can push aside now all these things we used to have to do in terms of washing tubes, filling his syringes, all the things that took time away from the children, Ellianna, more specifically," Jason said. "With where we've just come from I think it's a great step forward. We just keep praying that he keeps going forward as well."
The weaning therapy is not covered by insurance. The family has racked up at least $15,000 in medical expenses just in the last few weeks.
Family friends are throwing the Leffingwells a benefit to help with medical expenses. It is slated for 5 to 10 p.m. Saturday at Steny's, 800 S. Second St., Milwaukee. Dave Zylstra is DJing the event until 10 p.m. when The Grasshoppers, a rock band, will perform. There will also be a silent auction.
To make a donation or to read more of Elijah's story, visit youcaring.com/medical-fundraiser/elijah-deserves-to-eat/101466.
IF YOU GO
WHAT: Fundraiser for Mequon family
WHEN: 5 to 10 p.m. Dec. 21
WHERE: Steny's, 800 South Second St., Milwaukee
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