Tena­cious 5-year-old sur­vives heart dis­ease

Story by Lindsey Wells, pho­tog­ra­phy by Grace Brown

The Sentinel-Record - HER - Hot Springs - - Her Cover -

F ive years ago, Jen­nifer Smith held her new­born daugh­ter, Adelie, in a physi­cian’s of­fice as her fam­ily found out that she had been born with a ven­tric­u­lar sep­tal de­fect, a hole be­tween the bot­tom two cham­bers of her heart.

They were im­me­di­ately sent for an MRI. Six months later, af­ter the fam­ily be­came es­pe­cially fa­mil­iar with the in­side walls of Arkansas Chil­dren’s Hos­pi­tal, Adelie was in surgery.

Ac­cord­ing to the Amer­i­can Heart As­so­ci­a­tion’s web­site, in nor­mal de­vel­op­ment, the wall be­tween the cham­bers of the heart closes be­fore the baby is born, so that by birth, oxy­gen-rich blood is kept from mix­ing with the oxy­gen-poor blood. When the hole does not close, re­sult­ing in VSD, it may cause higher pres­sure in the heart or re­duced oxy­gen to the body.

Be­cause of this de­fect, Adelie was di­ag­nosed with fail­ure to thrive, which is de­fined as de­cel­er­ated or ar­rested phys­i­cal growth and is as­so­ci­ated with poor de­vel­op­men­tal and emo­tional func­tion­ing.

“She was fail­ure to thrive be­cause her heart was work­ing so hard to breathe and ev­ery­thing. That’s one thing, out of all of this, ev­ery­thing that’s hap­pened, the one thing that I’ve learned is that a prob­lem with your heart can cause so many other prob­lems,” Jen­nifer said.

Be­fore it was de­cided that Adelie needed to have surgery, the fam­ily rushed her to the emer­gency room when she be­gan pro­jec­tile vom­it­ing and be­came lethar­gic.

“We had no idea what was go­ing on. She had no fever, she didn’t look sick or act sick. She was only 5 months old. I guess the physi­cian that was in the emer­gency room called her car­di­ol­o­gist and I re­mem­ber be­ing told in the emer­gency room, ‘She’s prob­a­bly go­ing to need to have surgery within the next week.’ So she was ad­mit­ted from there, then they put her on an NG tube and we were sent home,” Jen­nifer said.

A na­so­gas­tric tube (NG tube) is used for feed­ing and ad­min­is­ter­ing drugs and runs through the nose, past the throat, and down into the stom­ach.

“I had to learn how to feed the tube down the back of her throat, which was dif­fi­cult,” Jen­nifer added. “We were sent home on the NG tube and she had a lit­tle feed­ing pump that she had to be on in the mid­dle of the night. Within a week I had a visit with the ac­tual sur­geon and the very next day she had surgery.”

A cor­rec­tive surgery was per­formed to cor­rect the hole be­tween the left and right ven­tri­cles of Adelie’s heart. Jen­nifer said a Te­flon-like ma­te­rial was used to patch the hole.

“The sur­geon ac­tu­ally brought us out a piece of the ma­te­rial just so we could see, have a vis­ual of what they were putting on there. They just sewed it around the hole,” she said. “We’re not sup­posed to have to go in to have any more surg­eries but if her heart was to grow and the ma­te­rial didn’t stretch out — your heart is a mus­cle and it’s sup­posed to grow around that ma­te­rial, but if it were not to grow around it then they have to go back in there just to patch it back up.”

Now, Adelie is a happy, healthy 5-year-old who en­joys tap dance, bal­let, and gym­nas­tics.

“She’s pretty bossy so she likes to get out there and hang out with the big girls,” Jen­nifer said, laugh­ing.

Be­cause of her fight against con­gen­i­tal heart dis­ease, Adelie was cho­sen to be the fea­tured sur­vivor at the 2018 Hot Springs Heart Ball, set for Feb. 24 in Horner Hall at the Hot Springs Con­ven­tion Cen­ter.

This year, the Heart Ball will be pre­sented by Na­tional Park Med­i­cal Cen­ter and chaired by Brian and Michelle Bell. This elite, black-tie event fea­tures prom­i­nent mem­bers of the health, phil­an­thropic and lo­cal busi­ness com­mu­ni­ties and is one of the pre­mier Amer­i­can Heart As­so­ci­a­tion fundrais­ing events, both lo­cally and across the na­tion.

This year’s event will fea­ture din­ner, silent and live auc­tions, en­ter­tain­ment, and the pre­sen­ta­tion of the Hot Springs Sweet­hearts, a group of high school sopho­more and ju­nior young ladies from the Gar­land County area who spend four months de­voted to heart-healthy life­styles and learn­ing about car­dio­vas­cu­lar dis­ease.

“Every year, the Sweet­hearts pro­gram grows and evolves and we are proud to have been a part of the Sweet­hearts pro­gram since it be­gan 12 years ago,” Mandy Golle­her, NPMC’s di­rec­tor of com­mu­ni­ca­tion and mar­ket­ing, said in a news re­lease. “Every year these young ladies ded­i­cate so much time and ef­fort into learn­ing more about heart dis­ease and then car­ry­ing out a heart healthy life­style. We see so many young women leave this pro­gram with a pas­sion for health care, with many go­ing into nurs­ing school, ra­di­ol­ogy pro­grams and even some in med­i­cal school. It is also our plea­sure to con­tinue our work with the Hot Springs Sweet­heart founders, Paul and Kathryn Rus­sell, who pour their heart and soul into the Sweet­hearts pro­gram every year to bring educa­tion and aware­ness to these young ladies against the No. 1 killer among men and women — heart dis­ease.”

The Rus­sels be­gan the Sweet­hearts pro­gram 12 years ago in mem­ory of their daugh­ter, Caro­line, who died at the age of 2 of a pos­si­ble un­de­tected heart con­di­tion.

The Sweet­hearts have each com­posed a pa­per about car­dio­vas­cu­lar dis­eases, which will be graded by in­ter­ven­tional car­di­ol­o­gist Dr. Troy Norred. The Sweet­hearts are scored on their pa­per, their vol­un­teer­ing hours and their ded­i­ca­tion to the Sweet­heart life­style through­out the four-month pe­riod. On the night of the Heart Ball, the one Sweet­heart who scores the high­est in the pro­gram will be named “Sweet­heart of the Ball” and awarded the $2,000 Caro­line Grace Rus­sell Memo­rial Schol­ar­ship and a piece of cus­tom “sweet­heart” jew­elry by Lau­ray’s — The Di­a­mond Cen­ter.

The 2018 Amer­i­can Heart As­so­ci­a­tion Sweet­hearts are Tay­lor Bell, Syd­ney Blount, Sa­van­nah Brown, Mary Made­lyn But­ler, Is­abella Cal­houn, Makayla Chap­mond, Mary Cather­ine Cowen, Hat­tie Anne Dou­glas, Alaina Ed­wards, Jay­cie Gibbs, Bai­ley Gib­son, Alexia Giom­betti, Ellie Glover, Ge­or­gia Gooch, Cait­lyn Gor­don, Sta­ley Graves, Ri­ley Green, Sophia Hardin, Emma Hickok, Kather­ine Horner, Hay­z­ley Ir­win, McKinley Jack­son, Jes­sica Jen­nings, Abi­gail Kin­der, Olivia Lawrence, Abby McMa­han, Cas­sidy Miller, Claire Monte, Kait­lyn Peters, Chloe Porter, Ains­ley Rot­ting­haus, Molly Stine­man, Ha­ley Strozyk, Swan Swin­dle, Aryanna Tapp, Ash­ton Toland, An­n­Marie Van Over­steeg and Ken­dell Webb.

Sharon Lanier, di­rec­tor of the Hot Springs Heart Ball, said that they ex­pect at­ten­dance at this year’s event to be close to 800.

“Fe­bru­ary is Na­tional Heart Month and it’s all about cre­at­ing aware­ness about heart dis­ease and how, as a com­mu­nity, we can come to­gether to help sup­port those who do deal with heart dis­ease and also ed­u­cate peo­ple about things that they can do to pre­vent heart dis­ease. The Heart Ball is re­ally just a night of fun and bring­ing to­gether the com­mu­nity, and cer­tainly it’s a fundrais- er for the Amer­i­can Heart As­so­ci­a­tion,” she added.

All of the funds raised dur­ing the event will go di­rectly to­ward Amer­i­can Heart As­so­ci­a­tion pro­grams and fund­ing re­search that helps to de­velop treat­ments for heart dis­ease.

On choos­ing Adelie as the fea­tured sur­vivor of the 2018 Heart Ball, Sharon said, “Each year we look for a per­son that has sur­vived ei­ther a con­gen­i­tal heart de­fect or heart dis­ease. Adelie was born with a con­gen­i­tal heart de­fect and un­der­went open heart surgery. It’s just re­ally a tes­ta­ment to what the AHA has done over the his­tory of our ex­is­tence in that we ac­tu­ally pro­vide the re­search and the treat­ment op­tions that help the doc­tors di­ag­nose heart de­fects, and then how to treat them.

“We look for some­one who has ac­tu­ally been through that process so that we can help put a face to it, be­cause many peo­ple know some­one who’s been af­fected, or maybe they don’t. When you see Adelie and see her story and you get a chance to meet her at the Heart Ball, it re­ally helps those who don’t re­ally un­der­stand it to con­nect more with the mis­sion of what we do.”

Heart Ball tick­ets are $150 and may be pur­chased on­line at http://www. hot­spring­s­heart­ball.heart.org. The event be­gins with a re­cep­tion and silent auc-

tion at 5:30 p.m., fol­lowed by din­ner at 7 p.m. and en­ter­tain­ment by DJ Hol­ly­wood be­gin­ning at 9:30 p.m.

NPMC is par­tic­i­pat­ing in an­other event with the Amer­i­can Heart As­so­ci­a­tion this year called Lit­tle Hats, Big Hearts.

Lit­tle Hats, Big Hearts is the Amer­i­can Heart As­so­ci­a­tion cam­paign, in con­nec­tion with The Chil­dren’s Heart Foun­da­tion, to col­lect knit­ted or cro­cheted red baby hats. The hats are dis­trib­uted to ba­bies born in hos­pi­tals across the coun­try dur­ing Fe­bru­ary.

Sharon said the vol­un­teer pro­gram is meant to raise aware­ness about heart dis­ease, the No. 1 killer of Amer­i­cans.

“Con­gen­i­tal heart de­fects are the most com­mon type of birth de­fect in the coun­try and a lot of peo­ple don’t re­al­ize that, how many lit­tle ones are born with some type of heart mur­mur or other heart de­fect. The Lit­tle Hats, Big Hearts pro­gram brings to­gether vol­un­teers and hos­pi­tals to dis­trib­ute these pre­cious lit­tle red hats dur­ing the month of Fe­bru­ary,” she added.

The Lit­tle Hats, Big Hearts pro­gram be­gan in Chicago in 2014 and is now in 40 states across the coun­try. Be­gin­ning in the fall of each year, vol­un­teers knit the hats, which are then laun­dered and pack­aged and de­liv­ered to par­tic­i­pat­ing hos­pi­tals.

Ap­prox­i­mately 2,200 red hats were de­liv­ered to hos­pi­tals in Arkansas this year.

Adelie, right, with her mom, Jen­nifer Smith.

Sev­eral of the 2017 Hot Springs Sweet­hearts re­hearse one of two dances per­formed dur­ing their pre­sen­ta­tion at the 2017 Heart Ball.

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