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
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.
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