ON THE COVER: Such a blessing - Dover mother raises twins-- one with Down SyndromeREAD ONLINE
Mother’s grief spurs fundraiser to benefit hospitalOriginally Published January 20, 2013 at 12:00 a.m.
Updated January 18, 2013 at 12:34 p.m.
Amanda Mulhearn of Conway is shown with portraits of her two daughters, Charlotte, left, and Stella, who died of unrelated causes five years apart. Mulhearn is a member of the Faulkner County chapter of Circle of Friends, which is sponsoring the Freezin’ for a Reason 5K/10K and 2K Family Run on Feb. 2 in Conway to honor the girls’ legacies and raise money for Arkansas Children’s Hospital. Mulhearn said the care her children received at the hospital was “unmatched,” and the staff became like family.
Amanda Mulhearn, 32, was sitting curled up on her couch, drinking coffee out of a mug that has printed on the side: breathe in, breathe out.
She had a tissue in the other hand because it’s hard to talk about her two babies dying without crying. No mother could.
On many days after her precious Charlotte died and five years later after her sweet Stella died, breathing in and out was all Mulhearn could manage. And she ran, mile after mile, trying to pound out the pain.
Freezin’ for a Reason is the result of anger put into action. Although the 5K/10K and 2K Family Run scheduled for Feb. 2 in Conway is in her daughters’ memories, it benefits Arkansas Children’s Hospital.
“I don’t want it to be just about them. In the future, I want the people within this area to know how lucky we are to have [Arkansas Children’s Hospital] this close,” Mulhearn said.
Amanda said she knew almost the minute she met Travis at church and then talked to him at a fraternity party at the University of Central Arkansas that he was The One, although she scoffed when her mother asked whether he was.
It didn’t take long to realize they were right for each other.
They were married 11 years ago on Dec. 15.
“It has gone so quickly. We’ve gone through more than our fair share,” she said.
Amanda and Travis are both from families of three children and are middle children.
“I think both of us always wanted three kids,” she said.
He is co-owner of Farris Insurance Agency in Conway.
Davis, now 8, was their firstborn, and her pregnancy was perfect.
She remembers holding Davis in her arms in the hospital while Travis was asleep on a cot.
“My eyes just teared up, and I said, ‘I’m going to worry about you the rest of my life,’” she said. “You want to protect them.”
She learned that despite her motherly instincts, that’s not always possible.
Amanda had Charlotte Diane Mulhearn on May 29, 2007. Davis was 2 1/2.
“Everything was going well until the week she was due,” Amanda said.
She started having pain in her ribs, and her obstetrician said, “Why don’t we go ahead and deliver this baby?’”
The doctor said the odds were “a million-to-one” that the pain was blood clots in Amanda’s lungs — but that’s what it turned out to be.
They took the baby early, and Charlotte seemed fine.
She was sleeping all the time, it seemed, and that worried Amanda. “Everyone said, ‘Be thankful,’” she said.
Charlotte’s newborn skin was mottled, and Amanda thought her baby was cold. Amanda said Charlotte was gaining weight.
When she took her for her two-week checkup in Conway, she happened to see pediatrician Pebble Sutherland as she was leaving after getting Charlotte weighed by a nurse.
Sutherland asked Amanda how things were, and she told her, “Something’s just not right.”
When Sutherland checked the baby, she told Amanda: “I want you to leave right now. I’ll meet you in the emergency room.”
From Conway Regional Medical Center, Charlotte was taken to Arkansas Children’s Hospital, already clinging to life.
Doctors thought Charlotte had a heart attack.
With tears in his eyes, the doctor told Amanda that Charlotte had a rare viral infection in her heart. Amanda couldn’t understand why the doctor was so upset — it was just a virus.
But, it wasn’t that simple.
Charlotte had three open-heart surgeries.
They put a Berlin heart on the outside of her tiny body. The device wasn’t approved in the United States, and doctors had to get special permission, Amanda said.
Charlotte improved. Her little heart started beating on its own, which doctors said wouldn’t happen if it had been a heart attack.
“We got extremely hopeful,” Amanda said.
They talked about putting Charlotte on a heart-transplant list.
She was unresponsive on July 5, and doctors said she had sepsis, a severe blood infection.
Charlotte’s virus was rare, but if she hadn’t gotten septic, Amanda said, she thinks her daughter would have made it.
“To think she fought so hard … it felt like the floor had been pulled out right from under you.”
On July 6, 2007, doctors gave them the news that Charlotte’s life support was going to be pulled.
“That’s something no parent should have to watch,” Amanda said.
When Amanda got pregnant again, she was happy, but “a nervous wreck the whole time.”
Stella Rose Mulhearn was born March 20, 2009, and she was fine.
“She was the epitome of joy,” Amanda said.
Stella was a feisty, independent little girl with big brown eyes like her daddy.
She’d wake up her mama in the morning, hop in bed with her, and Amanda would say, “Tell Daddy I need some coffee.”
Stella would run to tell her daddy, “Mama needs coffee,” and then take a sip from Amanda’s cup as they snuggled in bed together.
“She’d say, ‘Mama, I do love coffee,’” Amanda recalled.
Davis adored his little sister. A little too much, sometimes.
Once in a while, Stella would hold up her hands and say, “No hugs, no kisses” when he came up to her.
In October 2011, Amanda and Travis took the kids to a party at their church, First United Methodist Church in Conway.
She noticed Stella, 2 1/2, running around with her head cocked to the side.
Amanda asked if it hurt, and Stella said it didn’t.
Then Stella started walking like she was drunk, but she could sit and work a puzzle or draw.
They thought it might be an inner-ear problem.
“I was trying not to be over the top, which I got accused of all the time,” Amanda said.
Amanda took Stella to the doctor, where she was diagnosed with acute cerebella ataxia, which is not a big deal, Amanda said.
The doctor said as long as Stella didn’t get worse, not to worry.
“She threw up several times that night and was lethargic,” Amanda said.
Amanda took Stella back to the clinic, and a doctor said, “I hate to tell you this — I think you need to take her to Children’s.”
“My stomach was in my throat, and it was until we left,” she said.
Travis was out of state for work, but he was flying back that day.
Amanda called her aunt, Jan Davis, to drive them to Little Rock. “I can remember Jan saying, “This is not happening again.”
“The doctor walks in, with tears in his eyes. He said, ‘This is not good.’”
He took her into another room to look at Stella’s brain scan and told her there was a mass on the back of her baby’s brain.
Amanda’s voice trembled as she relived the moment.
“Travis got to the emergency room, and I remember hugging him and telling him how sorry I was. Not because I felt at fault, but because I knew how hard that road was going to be, and I knew we were going to have to do this again,” she said.
It was medulloblastoma, a cancerous brain tumor.
Stella had a 10-hour brain surgery, which got most of the mass, but little pieces of cancer called “sugar coating” were left on areas of the brain and down her spine, Amanda said.
The Mulhearns were told that Stella probably wouldn’t talk for a while, but she did as she was coming out of the anesthesia.
“The first words out of her mouth were, ‘I want my bunny.’ That made me happy.”
Bunny, given to Stella by her aunt Emily Lowery, was a constant, well-loved companion.
Because she wasn’t 3 years old yet, she couldn’t be given radiation.
“She had to get on chemo that was as strong as you can give a human without killing them,” Amanda said.
“She never walked again after that. She tried.
“It seemed like every time she would beat what the odds were at that moment, the disease would come on and beat her right back down,” Amanda said.
“We were very positive. I remember Travis saying to me, ‘I have no doubt in my mind if this can be beat, she’ll beat it,’” Amanda said. “I think that says a lot about him and a lot about her.”
The nurses and doctors at Arkansas Children’s Hospital “become family to you,” Amanda said.
Despite seeing cancer all the time, she said they weren’t jaded.
One of Stella’s nurses, Theresa, fell in love with Stella, and vice versa.
Stella told the nurse, “I love you” and kissed her smack dab on the lips, even though Theresa tried to offer her cheek instead.
“We were really fortunate that the best treatment she could have, the best treatment out there, was only 30 minutes away,” Amanda said.
That allowed her and Travis to come home to shower, sleep “and, most importantly, be with Davis, and for Davis to see Stella.”
“People come from miles and miles to have the treatment Stella had.
“Neither one of my experiences ended the way I wanted them, … but that wasn’t because of the hospital.”
They were in the hospital from October 2011 to April 2012. Stella came home once after her major surgery and for Christmas Eve, but she had fever on
Christmas Day, and they went back.
A stint was put in to drain fluid, which was clear of cancer cells, a positive sign.
Stella turned 3 on March 20. Between the chemotherapy and the cancer, “she was out of it most of the time,” Amanda said.
Amanda and Travis leaned on each other.
“When things were at their worst was when I’d step up to the plate to do my best,” Amanda said.
“When I’d lose it, Travis was there.
“Thankfully, I had a very good husband, a very strong marriage,” she said.
And a special son.
Davis is “a very precocious child,” she said. “He’s been a very bright light.”
She also can’t say enough good things about Arkansas Children’s Hospital.
The hospital also offers therapy for children and parents, and Davis met with a “wonderful” child life specialist.
“She and Davis had such a special little connection,” Amanda said.
“Travis and I were adamant that we were as proactive as we could be.”
In addition to a Caring Bridge website, which has had more than 1 million visits from people all over the world, they had the love and prayers of family and friends.
“Fortunately, we have a huge support group of family and community,” Amanda said.
The Mulhearns tried to stay hopeful, but in April the oncologist asked to meet with them on a Monday morning.
“Travis and I had a bad feeling,” she said.
“He said, ‘Well, I do have some bad news,’” Amanda said. “I thought, ‘How could this be happening?’ They didn’t know how long it would take for her to pass away, although they thought it would be quick. As a parent, it’s the hardest thing you’ll ever hear,” Amanda said, crying. “For me, to hear it was going to be quick was a relief at the same time.”
They were with Stella when she died hours later on April 3, 2012.
“I can remember thinking, ‘How can something so big just be gone?’” Amanda said.
Stella’s doctor had tears in his eyes when he said to her: “I don’t know that there’s ever been a child I wanted to heal more,” Amanda recalled.
“That was comforting to me to know they loved her, too, and I hated for them to lose her, too,” she said.
Her daughters’ deaths were not related. It was “totally random,” she said. It’s almost incomprehensible.
“What gets me up and going? [Stella’s] still affecting people’s lives. To do so much in 2 1/2, three years. If I can only have her for a little while, I’m sure glad I had her. Charlotte — at 6 weeks, she had a personality by that time. She was such a daddy’s girl. There wasn’t a whole lot of time, but wow.’”
“We still want three kids. There’s a piece of me that says I can’t do it again. There’s that piece that goes, ‘I love being a mom more than anything in the world.’ I can’t stop living. I don’t want to stop living. I still have love to give.”
Senior writer Tammy Keith can be reached at (501) 327-0370 or email@example.com.
Niche Publications Senior Writer Tammy Keith can be reached at 501-327-0370 or firstname.lastname@example.org.