FIND­ING GRAT­I­TUDE

Fam­ily gets help while deal­ing with crit­i­cally ill new­born and a dev­as­tat­ing fire

The Charlotte Observer (Sunday) - - Front Page - BY CRISTINA BOLLING [email protected]­lot­teob­server.com

For the To­gola-Sacko fam­ily of Char­lotte, 2018 will be re­mem­bered as the year their lives broke into pieces, then changed dra­mat­i­cally again by Christ­mas.

Their third baby, Aicha, was crit­i­cally ill when she was born in March. She had a struc­tural de­for­mity seen in fewer than 1 in 10,000 girls that caused her urine to drain back into her body, es­sen­tially poi­son­ing her or­gans.

And a month af­ter her birth, while she was still in pe­di­atric in­ten­sive care, a fire de­stroyed nearly all of the fam­ily’s be­long­ings in their East Char­lotte apart­ment.

But along the way, they re­ceived crit­i­cal aid from doc­tors, nurses, and later, the Sal­va­tion Army’s Christ­mas pro­gram.

“God heard our prayers,” said Mariam To­gola, Aicha’s mom.

‘A BIG RISK’

Doc­tors had told Mariam To­gola that her baby would be born with health prob­lems. But noth­ing could have pre­pared her for what hap­pened af­ter she awoke from her C-sec­tion on March 16.

Med­i­cal staff at No­vant Health Pres­by­te­rian Med­i­cal Cen­ter brought her a photo of her baby girl and ter­ri­ble news: 6-pound Aicha was hooked up to life sup­port and might not

sur­vive the next 24 hours be­cause her heart and other or­gans were not work­ing.

To­gola was so dis­traught, she needed se­da­tion. Her hus­band, Fous­seini Sacko, couldn’t stop cry­ing, she re­calls.

Near­ing the end of the 24-hour pe­riod, To­gola says, she was wheeled down to the neona­tal in­ten­sive care unit to see her baby for what she feared would be the last time. She was met by med­i­cal staff who told her that she’d have to wait to see her – but for a hope­ful rea­son.

Aicha’s heart had started beat­ing by it­self, and her other or­gans were start­ing to show signs of im­prove­ment.

The next day, three sur­geons per­formed emer­gency surgery to cre­ate a vesi­cos­tomy, a sur­gi­cal open­ing in the blad­der to the out­side of the body to al­low urine to drain. They also cre­ated an open­ing in her ab­domen that al­lowed vagi­nal flu­ids to drain.

Dr. Winifred Owumi, a pe­di­atric urol­o­gist who op­er­ated on Aicha on her sec­ond day of life, said Aicha wouldn’t have sur­vived with­out the risky surgery.

“When you put a new­born baby un­der gen­eral anes­the­sia – that’s a big risk,” Owumi said. “Just re­cov­er­ing from that surgery is a big deal. She was very crit­i­cally ill for a few days. … We were def­i­nitely wor­ried.”

GROW­ING STRONGER

A month af­ter Aicha was born, her dad was burn­ing in­cense in the fam­ily’s apart­ment when their apart­ment caught on fire.

To­gola was in the hos­pi­tal with the baby. Sacko man­aged to es­cape safely, along with their two younger chil­dren, 5-yearold Sa­ti­mata, and 2-yearold Laila. But nearly all of their be­long­ings were de­stroyed.

Nurses in the neona­tal in­ten­sive care sprang into ac­tion. They col­lected clothes and toys for To­gola, Sacko and their chil­dren.

Mean­while, the fam­ily has set­tled into a new home in a quiet apart­ment com­plex in East Char­lotte.

As the weeks wore on, Aicha got big­ger, stronger and more alert.

One of her nurses, Michael DeBetta, formed a spe­cial bond with her. One day, af­ter notic­ing that Aicha didn’t have any clothes be­low her crib like all of the other ba­bies in the NICU, he went to Mar­shall’s and bought sev­eral out­fits for her to wear in the hos­pi­tal.

He be­came sen­si­tive to her spe­cial sounds, and even on the days when he wasn’t as­signed to care for Aicha, he’d find him­self go­ing to her crib and check­ing on her.

“She had an un­con­trol­lable cry. You’d stop in your tracks if she cried,” he said. “I took that on as my iden­ti­fier.” Aicha’s par­ents, who were busy with their older chil­dren and work­ing to pay the bills, couldn’t be at the NICU all the time like some par­ents. So DeBetta made a point of call­ing them with fre­quent up­dates. (Sacko is a de­liv­ery driver for Ama­zon; To­gola works at a day­care cen­ter and is also a hair­dresser.)

It was June be­fore Aicha left the hos­pi­tal.

AT HOME

To­gola and Sacko were re­lieved when Aicha fi­nally came home, but car­ing for her re­mains a roundthe-clock job.

Be­cause she has two open­ings in her ab­domen to drain urine and vagi­nal flu­ids, she must wear two di­a­pers at a time that must be changed ev­ery hour to avoid in­fec­tion – one be­tween her legs, like other ba­bies, and an­other wrapped side­ways around her mid-sec­tion.

She has fre­quent doc­tor vis­its and ther­apy ap­point­ments, and an­other re­con­struc­tive surgery is com­ing up soon. Owumi ex­pects more surg­eries are ahead of them.

The good news, Owumi said, is that Aicha should be able to lead a nor­mal life and bear chil­dren.

‘PUSH HARDER’

De­spite the hard­ships of the past year, the fam­ily keeps a dizzy­ing pace.

To­gola is once again work­ing on her bach­e­lor’s de­gree, jug­gling study­ing while car­ing for her kids and work­ing at a day­care cen­ter.

To­gola re­cently com­pleted two classes at UNC Char­lotte to­ward her bach­e­lor’s de­gree in po­lit­i­cal science, with a mi­nor in data science. She started work­ing to­ward her di­ploma in 2011 and has been chip­ping away at her cour­ses when her fam­ily and work com­mit­ments al­low.

“Ev­ery­body asks me, ‘How do you do it?’ ” Mariam To­gola says. “But life is a choice. When it’s harder, you have to push harder to get to the other side.”

Her goal is to re­turn to the west Africa coun­try of Mali, where she and Sacko are from, to do com­mu­nity out­reach for women and girls.

To­gola says she’s the first in her tribe to earn an ed­u­ca­tion. Most girls are pres­sured to get mar­ried at 14 and start fam­i­lies soon af­ter.

She bucked tra­di­tion by flee­ing to Sene­gal to avoid mar­ry­ing young. She earned an ed­u­ca­tion and started work as a mar­ket­ing as­sis­tant in west Africa. She was 28 years old be­fore she mar­ried.

Some in her fam­ily dis­owned her, but her six broth­ers and sis­ters “are so proud of me,” she says.

“I want to work for the com­mu­nity, to give them some hope and say that ‘Yes, when it’s hard, it’s hard. But you never have to give up. You just have to have some­body who can en­cour­age you and give you hope.’ ”

‘PEO­PLE HAVE DONE A LOT’

The To­gola-Sacko fam­ily is Mus­lim, but they en­joy cel­e­brat­ing the sec­u­lar tra­di­tions of Christ­mas, as To­gola did as a child in Mali.

With Christ­mas com­ing and the fam­ily’s fi­nances tight – keep­ing up with Aicha’s ap­point­ments means To­gola can’t work more than 15 hours most weeks, and a hos­pi­tal stay is loom­ing – To­gola and Sacko turned to the Sal­va­tion Army’s Christ­mas pro­gram for help with gifts for their chil­dren.

Sa­ti­mata, 5, wants a hula hoop to re­place one that was de­stroyed in the fire. Leila wants a tri­cy­cle and art sup­plies. Aicha’s big needs are di­a­pers – size 4 to fit side­ways around her mid­sec­tion – and slip-on clothes that don’t have a waist­band putting pres­sure on her ab­domen.

Sa­ti­mata, Leila and Aicha are three of ap­prox­i­mately 7,300 chil­dren who will re­ceive gifts this Christ­mas thanks to the Sal­va­tion Army’s Christ­mas pro­gram, which matches chil­dren in need with anony­mous donors who buy the gifts.

Some 1,400 se­niors will also re­ceive gifts as part of the pro­gram. In cases where donors don’t come for­ward, Char­lotte Ob­server read­ers cover the ex­pense by giv­ing to the Empty Stock­ing Fund.

Money raised by last year’s fund al­lowed the Sal­va­tion Army to pur­chase 6,056 toys and 456 gifts for low-in­come se­niors.

Each child will also re­ceive a new back­pack this year, so Empty Stock­ing funds were used to pur­chase 8,000 back­packs and 20,000 small items to stuff in­side them.

Chil­dren in the pro­gram range in age from in­fants to 12 years old.

On Christ­mas Eve, presents for the fam­ily’s three lit­tle girls will ap­pear un­der a tree nes­tled by the fam­ily’s front door, thanks to kind-hearted donors and the Sal­va­tion Army.

To­gola says she’s over­whelmed by the help the fam­ily has re­ceived this year, both from nurses at No­vant and the Sal­va­tion Army donors who stepped up to buy her chil­dren’s Christ­mas presents.

She’s ex­cited to see the look on her chil­dren’s faces when they un­wrap their gifts un­der the tree on Christ­mas morn­ing.

“It’s a huge help,” To­gola says. “Peo­ple have done a lot for us.”

JOHN D. SIM­MONS jsim­[email protected]­lot­teob­server.com

Mariam To­gola’s third child, Aicha Sacko, was born in March with no open­ing be­tween her legs. She was ex­pected to live only 24 hours but was able to sur­vive sev­eral surg­eries. A house fire in April de­stroyed most of the fam­ily’s be­long­ings.

JOHN D. SIM­MONS jsim­[email protected]ar­lot­teob­server.com

As the weeks wore on, Aicha got big­ger, stronger and more alert. “God heard our prayers,” said Mariam To­gola, Aicha’s mom, who works and takes col­lege classes.

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