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Toddler fights with a brave heart
Jessica Foster
Staff Writer
Severin Brenny is 16-months-old, has a curly head of golden brown hair, a button nose, chubby cheeks and a curious smile.
He was named after his paternal grandpa and like him, could be described as a go-getter, strong willed and a flirty little ham.
To the outsider looking in, he appears to be a normal boy with a bright future, parents who love him, a big sister, Lauren, who looks after him and a twin brother, Carson, who always will be by his side.
His future may be bright. His parents always will love him. And Severin always will be very important in his siblings’ lives. But the details of that life, and the quality of that life, depend on medical advances, research, awareness and faith.
Severin was born with Hypoplastic Left Heart Syndrome. While healthy hearts have four chambers, Severin was born with just two. HLHS affects about 1000 babies born in the United States annually.
Left untreated, the condition is fatal. Earlier, the mortality rate was 95 percent by one month of age. Now, the survival rate at 3-5 years is 60 percent.
Severin’s left side of his heart is little and cannot pump enough blood to sustain his body. His mitral valve, left ventricle, aortic valve and aorta are underdeveloped.
Outlook
In the best circumstances, Severin will have to see a heart specialist for the rest of his life, will forever be on medications, and need a heart transplant at some point.
Statistics say 10 to 25 percent of these children die while waiting for a new heart. And there are negative side effects to the required medication.
Discovery
When Amy Brenny was 20 weeks pregnant, she and her husband Chad Brenny went in for an ultrasound. It had been a normal pregnancy and the ultrasound was routine. It revealed Amy and Chad soon would be the parents of not one baby, but two.
It was a time for celebration.
Three weeks later, Amy had a level two ultrasound. The level two ultrasound was given because twins were on the way. There were no other problems detected after the first ultrasound.
On June 19, 2002, after having the level 2 ultrasound, a doctor told Chad and Amy one of their twins had HLHS. He gave them little hope.
It was a time for prayer.
Options
The Brenny’s were given three choices on how to deal with Severin’s condition.
The first, called compassion care, is doing nothing.
“Things sounded so bad in the beginning we didn’t really think there was any hope,” Amy said.
Other options are a heart transplant or a series of three surgeries, the Norwood, Hemi-Fontan and Fontan. After doing much research, The Brenny’s decided on the series of three procedures having the transplant as an option if there were complications from any of the surgeries.
“It’s not a permanent fix. It’s not a cure. We still need medical advances. His future depends on it,” Amy said.
They decided to travel to Ann Arbor, Michigan and sought the expertise of Dr. Edward Bove, who is renowned for repairing HLHS.
While the procedures are done with success at Minneapolis Children’s, the Brenny’s decided on C.S. Motts Children’s Hospital at the University of Michigan Medical Center because they do about 60 surgeries a year, compared to about 6 here.
Michigan is considered to be one of the top pediatric heart centers in the nation, next to Boston Children’s and Philadelphia.
“Michigan was absolutely the best decision we ever made. It’s the whole package, they don’t just take care of your child—but your whole family,” Amy said.
A long road
The boys were born on September 23, 2002 in Michigan at 38 weeks. Severin was 5 lbs. 7 oz., Carson at 6 lbs. 4 oz.
Amy, Chad, their daughter Lauren and mothers, Florence Grunwald and Carol Brenny had arrived in Michigan early, on September 2. Chad and Carol returned to Minnesota after getting them settled in. It was important for Amy to be in Ann Arbor early, due to the risk of premature labor in carrying twins. Chad returned to MI a few days before Amy was to be induced into labor.
As little babies, the boys would spend twin time together in the NICU issolette as Severin awaited his first open heart surgery. Carson in his hospital pajamas and Severin hooked up to monitors and lines.
“I was not able to hold him until he was eight-days-old,” Amy said.
Nine days later, on October 2, little Severin was in surgery. The goal of the Norwood surgery is to rebuild the heart so the right side is the pumping chamber. The right ventricle pumps blood to the lungs and body.
“The first surgery is the most risky, it’s a very difficult surgery to perform. It was so extremely difficult for us,” Amy said.
The family stayed at the Ronald McDonald House, with other families who were praying for their own children. Florence Grunwald stayed for a month as did Chad’s mom, Carol Brenny. The Brennys saw families from South Dakota, Illinois, Tennessee, Texas, Kentucky, Michigan and Malaysia mourn losses and they saw families enjoy triumphs.
“The day of his surgery was just the beginning of the rollercoaster ride. The highs are so high and the lows are so low. Everything can cange in an instant, like when we first saw Severin after surgery and he went into cardiac arrest in front of us. That was the night we thought we were going to lose our son. His amazing nurse, Mindy, saved his life. After her shift ended she even called in the middle of the night to check on him. That is just one of many stories of the amazing staff at “Pod A” that cared for our son.”
The family returned to Forest Lake on October 29, 2002 before going for the second surgery in March of last year.
The goal of the Hemi-Fontan is to lessen the workload for the right ventricle. When completed, the right side of the heart only pumps blood to the body.
A lot of kids never make it home. A lot of kids never make it to the second surgery.
“We felt so victorious he made it to the Hemi,” Amy said.
Severin still has problems with swallowing and gets his nutrition via a feeding tube. He recently overcame a problem with acid reflux and his parents report he is improving—crawling, getting around by himself and being more cheerful.
“He’s a new little guy,” Amy said. “He’s advancing by leaps and bounds now. You can just tell he feels so much better.”
This fall, he will attend a feeding program to help him learn to eat traditionally.
Severin will have his third surgery late this spring. The purpose of the Fontan surgery is to bring the blue blood coming back from the body to the lungs.
This surgery, the Brennys say, will be the hardest emotionally.
“This is a dreaded surgery. It’s heart wrenching for the parents and for him,” Amy said. “We just dread going through this for him. It’s a hard age and it’s going to be hard on mom and dad, too.”
After the surgery, Severin will be hospitalized for 2-6 weeks. All along, the Brenny’s have been looking to the next surgery. Now, the future is more uncertain.
After the third surgery, the Brenny’s will look for signs of Severin’s heart failing. Then, he can get on the list to receive a new heart.
“He will have to have a transplant at some point,” Chad said. “We don’t know what the future holds. We know we do need more medical advances and research,” Chad said.
Sitting in the living room of their Forest Lake home, Chad and Amy have pride for their children.
“They’re very good babies,” she said.
And they are thankful for their families.
“Our parents have helped us so much,” she said. “That’s how we survived the three hour feedings and Severin’s medication given eight times daily when we first came home—the grandmas and the grandpas. We had a lot of help from our family.”
The Brennys chose to share their story because they said awareness of congenital heart defects and organ donation is vital.
With more awareness comes more action, with more action, more success.
“Severin is our heart hero. He is such a brave little boy. He has people from all over the U.S. praying and cheering him on via his care page. He has taught us many lessons—one of them that every day is such a gift to be cherished,” the Brennys said.
“Throughout everything we know that while his defect is devastating, we know from watching other families experiences that things could be worse. We have experienced many positive things throughout this journey, like the friendships and bonds made with other families going through the same thing. Our lives have been enriched with wonderful friendships. Our family has truly been blessed with Severin, Carson and Lauren.”
They tell their story to help others who may be in their situation.
“There is hope out there for families that are diagnosed with congenital heart defects,” Amy said. “Be your best advocate or your child’s advocate. Do the research. Ask about success rates. Do what you’re comfortable with.
“Being out of state for two months was a long time. We learned that home is where the heart is and that happened to be Ann Arbor for awhile. Now there are times we actually miss Michigan.”
The Brenny’s also hope to raise awareness of the importance of organ donation.
They’ve heard the figures—that eight people die every day waiting for a transplant. And they have seen the miracle in familes who received the ultimate gift off life for their children from another family’s loss. And they know of a family from Tennessee who lost their daughter, Rachel, was time ran out waitingfor a heart.
“I remember when we first received the news that “baby b” had a fatal heart defect,” Amy said. “I recall going to renew my driver’s license that summer and the little box you check to be an organ donor truly has so much meaning to my family personally.”
People can make a difference for babies like Severin in day to day decisions.
“Donations we make to organizations now, I check first to see if we can direct it to congenital heart defects. I know there are things that I can do to make a difference. Severin has already particpated in research at the University of Michigan that will help babies in the future. We pray for a day that no family will have to go through this,” Amy said.
Follow up
February 14 has been designated as A Day for Hearts, Congenital Heart Defects Awareness Day. The day will serve as a kickoff to a public awareness campaign.
Organizers hope the day will bring about awareness, research funding and assist support groups.
For more information on A Day For Hearts, visit www.chdinfo.com/chdaware/dayforhearts.htm.
To sign a petition addressed to President George W. Bush asking for a presidential proclamation for Congenital Heart Defect Awareness Day, visit www.PetitionOnline.com/chd2004/petition.html.
To track Severin’s progress, visit www.tlcontact.com, carepage name: severinbrenny.
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