Baby Unami born with her or­gans out

Funds are needed for Unami to un­dergo an im­por­tant surgery that can give her a chance at a healthy life

Move! - - CONTENTS - By Pheto Ra­makobya

MOST ba­bies take their first steps some­time be­tween nine and twelve months, and by the time they reach 14 or 15 months, they al­ready walk well. But that is not the case for 16-mon­thold Unami Gumede. She was born with a un­usual con­gen­i­tal de­fect called Gi­ant Om­phalo­cele, a rare birth de­fect that oc­curs when the stom­ach wall fails to close and the bowel, liver and other or­gans pro­trude into the base of the um­bil­i­cal cord, cov­ered by a thin mem­brane.

HOP­ING FOR THE BEST

“The past 16 months have been the tough­est I’ve ever had to en­dure, the fi­nan­cial and emo­tional strain this sit­u­a­tion has put me through is no walk in the park,” says Nothando Gumede, Unami's mother (37). “I don’t know where I’d be right now or what I would’ve done with­out my med­i­cal aid, even though I’ve had a few run-ins with my med­i­cal scheme due to un­paid hos­pi­tal bills.” The sin­gle par­ent says she was told about Unami’s con­di­tion about six months into her preg­nancy and was given the choice to keep or ter­mi­nate her preg­nancy. De­spite what she had been told about her daugh­ter’s con­di­tion, Nothando chose to ac­cept God’s will and keep the baby. On 16 May 2017, Unami was born with Om­phalo­cele. “When Unami was born, she was far more beau­ti­ful than I ex­pected af­ter months of read­ing about and look­ing at pic­tures of ba­bies with this con­di­tion. It gave me hope that this Om­phalo­cele will be re­versed too,” she says.

THE BE­GIN­NING OF THE JOUR­NEY

Om­phalo­cele is a con­gen­i­tal de­fect that oc­curs in 1 of 4 000 births and is as­so­ci­ated with a high mor­tal­ity rate of 25 per cent and se­vere mal­for­ma­tions such as car­diac anom­alies, chro­mo­so­mal de­fects and sev­eral other de­fects. With Om­phalo­cele, the baby is born with ab­dom­i­nal or­gans, like the liver and in­testines, out­side of the body, dis­tinctly vis­i­ble but en­cased in a mem­brane.

Baby Unami was also born with bi­lat­eral hy­poplas­tic lungs, which means that both lungs didn’t ma­ture fully when she was in the womb. For this rea­son, among sev­eral oth­ers, Baby Unami had to be fully ven­ti­lated in the In­ten­sive Care Unit (ICU) for the first six months af­ter birth. She had a tra­cheotomy con­nected to oxy­gen, so that she could be able to breathe, at nine months and dis­charged with a home ven­ti­la­tor. Nor­mal feed­ing is not pos­si­ble be­cause of her de­fec­tive anatomy,

there­fore, a na­so­gas­tric tube was in­serted to help her feed. A na­so­gas­tric in­tu­ba­tion is a med­i­cal process in­volv­ing the in­ser­tion of a plas­tic tube through the nose, past the throat, and down into the stom­ach.

“Unami was also born with two holes in her heart, one hole was sur­gi­cally closed at 10 months, and the sec­ond hole couldn't be closed at the time and the pro­ce­dure was de­layed be­cause Unami had al­ready un­der­gone a lot of sur­gi­cal pro­ce­dures in her first year of life,” Nothando says.

FI­NAN­CIAL STRAIN

Nothando ex­plains that she has made peace with the fact that her fi­nan­cial sta­tus took a dip and that get­ting the proper health care for Unami came with a hefty price tag. “The med­i­cal aid cov­ered what they could only cover and the rest of the bill I had to cough up. Some­times the med­i­cal aid didn't cover cer­tain med­i­cal pro­ce­dures and I had to pop out the money,” she says.

Nothando says Unami has al­ways been on about 12 dif­fer­ent med­i­ca­tions at a time.

The large num­ber of po­tent med­i­ca­tions is es­sen­tial for Unami’s sur­vival, but also pose health risks due to the toxic na­ture of medicine and the side ef­fects that come with it. On 17 Septem­ber, Unami suc­cess­fully un­der­went a fourhour long ab­domino­plasty, where they re­con­sti­tuted her ab­domen and put back her ab­dom­i­nal con­tents in­side the cav­ity. The hope now was that her lungs will fully de­velop and reach op­ti­mum func­tion­al­ity soth at she can be taken off ven­ti­la­tion. “How­ever, this was quickly shat­tered as it was dis­cov­ered that the sec­ond hole in the heart had not self-closed but rather en­larged and now ur­gent surgery is re­quired,” she says.

FUNDS NEEDED TO SAVE HER LIFE

Unami has been fight­ing to live for the 16 months of her life and faced all her de­fects, ma­jor oper­a­tions and mul­ti­ple hos­pi­tal ad­mis­sions. She now needs an im­por­tant surgery to give her a chance at a healthy life, but in or­der for that to hap­pen, funds are needed to cater for the in­creas­ing med­i­cal bills and other costs that come with pro­ce­dures of this mag­ni­tude. Nothando hopes that this will be the last hur­dle Unami will have to jump in her quest of liv­ing a nor­mal life like other kids her age. My wish is to even­tu­ally open a foun­da­tion for un­der­priv­i­leged ba­bies suf­fer­ing from Om­phalo­cele who might not make it due to the lack of funds, re­sources and ac­cess to highly

I WAS GIVEN A CHOICE TO KEEP OR TER­MI­NATE THE PREG­NANCY

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