Marrio Norman stroked the dark, wavy hair on his baby’s head, one of the few places on 3-week-old Elijah’s body that isn’t encumbered by a tube or other medical device.
Elijah’s mom, Loni Benau, dreams of holding their “little champ” one day.
But for now the Atlanta, Georgia, couple and Marrio’s mom, Sandra, hover over his incubator at Spectrum Health Helen DeVos Children’s Hospital, hoping and praying God and good fortune continue to smile upon this little boy who has defied all odds.
Born five weeks premature with a severe congenital heart defect that doesn’t allow the heart to pump enough blood to the body because it is underdeveloped, Elijah had been given zero chance of survival by doctors in Atlanta.
When Loni’s doctors discovered fetal heart defects at 20 weeks, she said some encouraged her to terminate the pregnancy.
She and Marrio prayed about the decision. They decided, with God’s help, to stay the course.
Elijah was born via emergency C-section July 13 in Atlanta. He weighed 3 pounds, 15 ounces.
Although he could breathe on his own, heart issues lurked like a silent thief.
Refusing to say goodbye
In early August, Atlanta doctors told the family there was nothing more they could do.
The doctors suggested the family take Elijah home and spend what time he had left on earth—likely two days, or three days max—together as a family.
But Elijah’s grandmother, Sandra, wouldn’t accept that verdict.
She had recently retired from a job as a registered nurse, where she worked with adult cardiac patients. She refused to listen to those doctors.
In the short time she had known her little grandson, she knew him to be a fighter. Strong, like Muhammad Ali. A champion. Not a quitter. Not a dying child. But a survivor.
“I wasn’t hearing that,” Sandra said of the doctors’ prognosis. “I said, ‘No, no.’ I wasn’t accepting that at all. I just believed. We had a strong belief he was going to live and not die.”
Sandra jumped on the internet and researched, looking for cures for hypoplastic left heart syndrome in babies under 4 pounds.
About 3 a.m., the answer appeared.
“It just popped up on my screen,” Sandra said of a Spectrum Health Beat story titled Mighty Girl thrives.
She read about Mighty Girl Alexandra Mae Van Kirk, a now-3-year-old whom Joseph Vettukattil, MD, pediatric interventional cardiologist, treated at Helen DeVos Children’s Hospital when she weighed less than 2 pounds. Like Elijah, she also suffered from a severe heart problem.
Mighty Girl story begets Mighty Boy
Alexandra is doing great these days.
Sandra immediately knew her grandson could become “Mighty Boy” if given the chance.
“God just put it right in front of my face,” Sandra said as she stood near her grandson’s incubator. “Two articles came up about Mighty Girl and this place. My heart just skipped a beat. I said, ‘Thank you, Lord. Thank you.’”
The next morning, the family called Dr. Vettukattil’s office. He was on vacation, but ended up coming home early so he could assist little Elijah.
Since I’ve been here, I’ve had a calmness come to me. As scared as I was, I felt like God just placed all this support here for us and our little miracle baby.
Marrio, Loni and Sandra had never been to Michigan, but they knew that without making the trip, their little champ would be resting in a casket instead of someday in their arms.
A medically equipped plane picked up Loni and Elijah in Atlanta on Aug. 2. Marrio and his mom flew up Aug. 3.
On Aug. 4, Dr. Vettukattil and pediatric cardiothoracic surgeon Marcus Haw, MD, performed a hybrid procedure.
Dr. Vettukattil performed a catheterization, entering the lung artery directly using a catheter while Dr. Haw cut through Elijah’s sternum and performed surgery on the lung artery branches to restrict the excessive blood flowing into Elijah’s lungs.
Elijah is now recovering in the pediatric intensive care unit. Dr. Vettukattil and other Congenital Heart Center team members visited Elijah and the family Friday morning.
“It’s all good signs,” Dr. Vettukattil told the family in their eighth-floor room. “He’s doing very well. But sometimes, I worry when babies are so small. The worst time is over.”
Shortly after, Dr. Haw stopped in, touched Elijah’s foot and looked at the monitor numbers.
“How’re you guys doing? You OK?” Dr. Haw asked.
He explained that Elijah will likely be weaned from the breathing machine in the next several days.
“A tiny baby like this doesn’t need a lot of strength to be able to breathe easily on his own,” Dr. Haw said. “He’s remarkably stable. We didn’t expect him to be quite so stable.”
Marrio, who calls his son “The Honorable Elijah,” smiled.
“It’s awesome,” he said. “We serve an amazing God.”
Dr. Haw explained parts of the surgery. There were difficult parts. Elijah’s pulmonary arteries were hidden. Dr. Haw had to pass a metal instrument around them, without hitting anything.
A tiny miracle
“When a baby is this small, it’s impossible to do the standard operation,” Dr. Haw said. “Therefore we do something called a hybrid, where the surgeon and the interventional cardiologist work together to stabilize the circulation.
“In a baby of less than 4 pounds, many surgeons would not wish to do that procedure,” he said. “We felt that the baby’s condition was such that he stood a reasonable chance of making a good recovery and therefore we offered the treatment.”
Dr. Haw told the family how each morning at 8 a.m., the team will gather around, discuss what happened in the last 24 hours and make plans for the next 24 hours.
That’s how the family is living these days: day by day.
“For some reason they didn’t want to take a chance and do this in Atlanta,” Marrio said. “Because he was so small, I guess it scared them. But here, they were confident in their ability and their belief in themselves. Dr. Haw, Dr. Vettukattil and the whole team did a marvelous job. Elijah is doing real good but we’re just going to take it one day at a time.”
Dr. Vettukattil said he’s hopeful, but Elijah is still in the proverbial woods.
“This is extremely rare to have this particular combination where the children are extremely small and their heart is so complex,” Dr. Vettukattil said. “This is a last resort when nothing else is possible. It’s a long journey for them. This is not the end of their story.”
If all goes smoothly, Elijah will have a second heart surgery when he’s about 3 months old, and another between the ages of 3 and 5.
“He’ll be high-risk for life,” Dr. Vettukattil said.
Elijah will be able to kick a ball and play, but he won’t be able to play competitive sports. He’ll likely be a candidate for a heart transplant as an adult.
“We had a very good result (with this procedure),” Dr. Vettukattil said. “When babies are so small, it’s so unpredictable.”
But Loni knows her little boy. She’s convinced he’ll pull through this.
“He’s definitely our miracle baby,” she said. “He’s the little fighter. We call him the champ. He’s beaten all odds. I’m so happy we had the surgery and it’s successful. Look at our Mighty Boy over there.”
Everyone was doing just that, looking at the cute little curly-brown-haired boy, who opened his eyes to glance at his mama when she kissed his cheek.
The family said they feel so strengthened by the many who are praying for them and Elijah, those in Georgia and now those in Michigan.
“Since I’ve been here, I’ve had a calmness come to me,” Loni said. “It’s so friendly and the colors are so happy. It’s lit up. It’s not dark. As scared as I was, I felt like God just placed all this support here for us and our little miracle baby.”
I have been praying for this family. This has brought tears of joy to my eyes and heart. Loni is very close to my family and we share her pains but today we celebrate their joy. I love you and continue to pray for God’s Blessings.
Thank you, Stephanie, for your words of comfort and joy. Feel free to share little Elijah’s story with your friends and family as you continue to keep him in your thoughts and prayers. 🙂
We just moved here to Georgia from Michigan and I truly regret moving my son was born at 5 months at Helen devos children hospital he was in the best hands in the world they are like angels sent from God we live there for about 5 months and they make you feel like family. Don’t be worried he is in good hands and he will be ok my son is prove of how wonderful they are there may God bless and I will pray for your family and hope I’ll be back home to Michigan soon since my son still requires medical needs
God is so good !! We have been praying for Elijah in North Carolina. Loni, my sister Sharon has been keeping us informed about ” Mighty Boy”. We’re overjoyed that everything is going well, and we’ll continue to pray for Elijah.
God is so good!! We have been praying for Elijah in North Carolina. Loni, my sister Sharon has been keeping us informed about “Mighty Boy”. We are overjoyed that everything is going well, and will continue to pray for Elijah.
My favorite part of this is that” no” was not accepted! Glory to our everlasting Father!!
May God Bless our doctors at Spectrum Health. Praying God will wrap his healing arms around Elijah. Comfort and Peace to his Mommy and Daddy.??
This place of Grand Rapids Michigan is so wonderful. It is full of God’s grace and His wonderful people. So happy for you that you kept faith and it brought you here for a successful surgery. God bless
Praying without ceaseing my little cousin and the family. We as a family know who holds our hand. God is an awsome God and a healer. Love you guys. Praying for strength and health
Loni, I’m so grateful that your little boy has beaten the odds. God always gives the final word. Keep praying and continue to put God first and everything will go according to his plan. It’s wonderful to see you smiling just as you did when you were in my Kindergarten class. Love you guys!
Loni, I keep you and Elijah in my prayers daily. GOD has truly blessed you. You are an amazing woman with an incredible son and I pray that God will continue to move mountains for your family. It’s parents like you and Marrio and patients like Elijah that keep me going. May God continue to bless you.
Not a lotof people are aware that HDVCH also has an office in Lansing on Jolly Rd by the post office
Thank you Jesus!What a wonderful GOD we serve.When Linda,Loni’s mom,informed us of the situation with Elijah we knew where we had to go and who we had to go to.To say it was amazing to see GOD begin to work is an under statement.From the removal of negativity to the 3am dawning of discovery of Mighty Girl and Dr.V.and Dr Haws and to wonderful calmness that our Loni is now feeling.It has enforced belief in some and made believers out of many.May GOD continue to walk with Elijah and his family and friends.(Look at the name y’all)ELIJAH!!!
My God is awesome. He grants his mercy and grace every day. ( the song says I’m looking for a miracle and God says nothing is impossible We have to pray and get our mind on him. UPS prayer warriors and her friends and family from all over see what God can do. Daddy and Lonnie we Love
GOD is good all the time he has never failed us yet with GOD on our side nothing is impossible GOD has the last word not man I love you and your family I am praying day and night
I’m in tears after reading and hearing Elijah the Mighty Baby Boy parents speak on their baby’s illness. God is good and will watch over and be with little Elijah and his parents.
Praying 4 my family..God works miracles,It reminds me of my daughter having 2 have Heart surgery at 8 months,She was born with VSD’s Ventricular Septical Defect …This is where multiple holes are in an around, the heart it keeps blood from flowing 2 the heart… She had a P.A.band put around her arteries in 1995 and 1998 they went back 2 remove band and all holes had close on their own..Tell me God ain’t good!! Hold on family God has something in store 4 Baby Elijah,We love u all & will be praying
Wow! Hallelujah! What an incredible story that will continue day by day!!! This Michigander is praying for healing for Elijah”The Mighty Boy” & strength for Mom, Dad, Grandma and all who love them! Welcome to the world little one keep on fighting!!! May God continue to Bless & keep you!!! I am sharing this on Facebook and my pray warriors will be added to yours!!!
To God be the Glory
God has all power in his hands and Elijah was in his hands before he was born. We prayed and he heard and answered our cry, and we thank you Father, thank you, thank you.
Loni, Elijah, your G mama loves you very much,and I will continue to pray and thank him for you each and every day.
This give me hope and faith for my baby boy who has hypoplastic left heart syndrome i jusy met with dr haw and the neonatal team im 33 weeks almost 34 im so scared in so many ways but reading baby elijahs story brought tears of joy to my eyes i have given this all to god and i know my little man is a fighter already because we have god and a awesome team from helen devos on our side 🙂 please if you know of any groups on facebook who have parents like us with babies that have hlhs please share to me i have been looking alot mostly have found ones outside of our state god bless and prayers continued.
Hi Elizabeth, We’re so glad you’ve been able to find hope in reading Elijah’s story on Health Beat. He’s a special little boy. We wish you and your little baby boy all the best as you make this journey. Sincerely, Cheryl
Good evening Elizabeth! I am Elijah’s mom. If you ever want to talk I am always available. email@example.com
Praying for you and your family . God will provide.