By Alex Gahima
A 7 month old baby girl, by the names of Uwase Paula, who was recently diagnosed with Down Syndrome is in urgent need of an operation, after doctors discovered life threatening holes in her heart.
Uwase also known as Buju or small, by family and close friends, is the last born child to Paul Ntawurutundi a farmer and Jane Birungi, a health assistant attached to Nyabihuniko HC III.
“This is the biggest test our family has been hit with, in the last 10 years of our marriage”, Ntawurutundi explained.
Ntawurutundi and Birungi, who reside in Kibande village, Busamba Parish, Southern division, Kisoro Municipality have been blessed with four daughters including Paula Uwase.
According to Ntawurutundi, baby Paula, who generally looks fine critically needs a heart operation in India at the Narayana Health facility in Bengaluru, India.
“The doctors at Mulago recommended that Paula be operated on, in August, but it was not possible for us because we did not have the money and the Covid-19 restrictions made it even more difficult for us to reach out to friends and family for financial support, Ntawurutundi said.
The Beginning of our Problems as a Family
Birungi Jane explains, that baby Paula was born on February 2nd 2021 with 3.5Kgs which is perfectly normal for a child.
She further explained that she began noticing something was wrong with her baby, after she continued to lose weight.
“My child was losing weight despite all my efforts to feed her. I even introduced her to NutriStart Infant formula and she would finish the entire tin but there was no difference, this greatly worried me”, Birungi said.
Mr. Ntawurutundi says he advised his wife to take the baby to Porter’s Village because, in Kisoro district, they are well known for handling Paediatrics.
Baby Paul Uwase was accessed and put into a scan where her abnormalities were first discovered, Baby Uwase had three holes and an enlarged artery in her heart.
“The cardiologist at Potters’ said my daughter was suffering from Down Syndrome. She explained that baby Paula needs further management if she is to survive”, Birungi exclaimed
With the support of Voice of Muhabura and other social media platforms, the family embarked on a campaign to raise money to save Paula.
“Action for Disadvantaged People (ACDIPE), an NGO has offered to cover medical costs including the operation ranging between US$ 7000 to US$ 9000”, Ntawurutundi explained, “Through community mobilization, we have managed to raise 15 million shillings”, Ntawurutundi noted.
Ntawurutundi and Birungi say they still need 40 million shillings to cover other costs while in India.
“People of Kisoro have been very supportive and we acknowledge Kisoro Municipality Member of Parliament Paul Buchana Kwizera who offered return plane tickets, Vietnam Consul and Philanthropist King Caesar Augustus Mulenga offered us 2 million shillings while Hon. Alex Niyonsaba says he will give us 1 million shillings, we are truly grateful”, Ntawurutundi emphasized
What is Down Syndrome?
Also known as Trisomy 21, Down’s syndrome is a genetic disorder caused when abnormal cell division results in extra genetic material from chromosome 21.
Judith Uwimana, a Nursing officer and Physiotherapy assistant at Potter’s Village says Down syndrome can be referred to as a mistake that occurs in the genes of a child.
According to Uwimana, the number of reported cases of Down Syndrome at Potters’ Village since 2019 to date has reached 24.
“These are the ones we know of, because mothers have come to seek for help however there are many children locked away in homes because people associated this disease to being bewitched which is not true”, Uwimana explained
According to the Uganda Down Syndrome Association (UDSA), figures on the prevalence of the malformation is not readily available although the number of babies born with the disability is estimated at about 1 in 1,000 births.
Uwimana says, a pregnant mother is likely to produce a baby with Down Syndrome, if they give birth before the age of 18 as well as give birth to children after 40 years.
She advised women who intend to be mothers to go for antenatal as soon as they have conceived so as to get information about Folic acid and other necessary supplements that guarantee a new born baby is healthy and strong.
A medical team from Mbarara Mission Hospital is expected to visit Potters Village on September 30th 2021 to assist children with Down Syndrome, Spinal Bifida and Hydrocephalus.