Our son was diagnosed with Down Syndrome

Alfred and Rose Niwagaba with their son who has Down Syndrome. Photo by Roland Nasasira.

What you need to know:

Her journey. Rose Nambooze Niwagaba and her husband were expecting a bouncing baby boy when doctors broke the news that the baby would be less than perfect. They spoke to Roland D. Nasasira about raising a child with special needs.

In 2010, Rose Nambooze Niwagaba gave birth to a baby boy at the University of Antwerp Hospital in Belgium. At that time, she was pursuing a Master’s degree in Globalisation and Development.
During pregnancy, Nambooze says she did not have any complications. When she started experiencing labour pains, the foetal heartbeat disappeared. She was then rushed to the theatre to remove the baby. At birth, the baby did not cry. Doctors told Nambooze that the baby had foetal distress.
Immediately, the baby was rushed into an incubator to support him breathe. On recovery, a day later, doctors would not disclose the condition of her son much as she kept asking. The baby was immediately taken to another hospital where he was diagnosed with three holes in the heart. Oxygen supply to the baby was so low that he could not breathe on his own.

From that incident, counsellors were brought in to speak to Nambooze and her husband, Alfred Niwagaba before breaking the news to them that their son, Abryl, had severe Down’s syndrome. He had a heart problem, hearing loss, a narrow throat and his lungs were clogged.
“At the mention of the word Down syndrome, my soul crashed because it was not what I expected to have. Everything blacked out at that time. My dreams of the bouncing baby boy were gone and all in the first week of birth. At that time, it was important for me to continue with my studies but also to come to terms with what we were going through,” Nambooze recalls.

Saving Baby Abryl
“He (Abryl Niwagaba) survived in the Intensive Care Unit (ICU) for 18 months because we were not aware of his condition. Doctors took us through sessions to make us understand what Down syndrome was. Being a student at that time and a mother of a problem child, was stressful. My soul crushed because I did not know what to do with my son. One of the biggest problems I went through was that I could not breastfeed him because he was in the ICU,” she adds.

“Every time they told me to pump milk to breastfeed him, I felt bad because the bonding of a child and a mother to breastfeed a child is the greatest feeling I could ever have. It was even difficult to let our friends know that we had a bouncing baby boy because he wasn’t bouncing. This was at one week of birth,” Nambooze recalls.
As a mother, Nambooze says her greatest pain was carrying her son for nine months and getting what she didn’t expect. She had never heard about the term Down syndrome much as she had worked with child Non-government organisations.

Now aged seven, Nambooze says her son, Abryl has been operated approximately nine times. Doctors have closed two holes in his heart and that he also has a special hearing device called a ventilator that was fitted deep inside his hearing system. He started sitting at the age of two years and walked much later.
“You have to be patient with children with Down Syndrome and access very good health care. Every year, we travel with our son to Belgium for a heart control because there is a hole in his heart that still leaks blood. Being born with a heart problem requires very good operations because they may at times not be successful. You have to control the infections as much as possible,” she says.

Stigma for parents of special needs children
Nambooze confirms that there is a lot of judgement from society as parents raise children with special needs. Neither has it been easy for her as a mother of a child with Down syndrome. She says it takes a lot of effort and consistency since her son’s life is all about the hospital, unpredictability and patience. From sitting to walking, everything in the child’s life took long.

“In these children, you discover who you are. In Abryl, I have come to know my strength as a mother. He has taught me to be patient because I used to be an impatient person. Even when I greet him, “how are you?”, he will not answer immediately that he is fine. I have to wait as I maintain eye contact to make him understand what I am trying to say. He has taught us virtues of loving unconditionally irrespective of the ability of someone. He is my best teacher. He teaches me what he wants me to do but not what I want him to do,” Nambooze says.

Inspiration to open Angel’s Centre
When Nambooze was in hospital, she had her computer where she documented the day’s emotions as she looked after her son. It is then that she thought of starting up Angel’s Centre for children with special needs where she is the director, to let the world know that even when her son had passed on, she would explain to people who her son was. She was not sure he would make it.

“I asked myself what it was about Down syndrome that I could not learn. I felt like I should share the journey I went through with mothers in Uganda. My husband and I would hold each other and cry, thinking of what we had gone through,” she says.
When Nambooze and her husband came back to Uganda in 2012, their son was about two and a half years old. When he made six years in 2017, they finally started having personal time.

“Having started Angel’s centre for children with special needs, I have seen children with Down syndrome die. At the centre, we have lost eight children due to Down syndrome and most of them have died because there has not been access to good health care. Others have died after and before operations and a number from other circumstances. Creating awareness about Down syndrome every March 21 is to create awareness to the public to know the needs and challenges of children with special needs. It is also to understand the challenges families go through to take care of these children,” Nambooze asserts.

“When we came back, the first thing I did was to write an article about Abryl and it was published in this newspaper. From that time, many parents contacted me about Down syndrome. Before I knew it, I told them I would get a place to rent to get the children together, play and interact and support them in their social development. We shared stories on how to raise these children,” she adds, explaining that Angel’s Centre is an organisation for parents who have children with special needs. The couple have two other children.

What the husband says
Alfred Niwagaba says it is common for men to run away from their responsibilities when their wives give birth to children with special needs.
“When you are in love or have a family, you do not agree to denounce your partner if they give birth to a child or children with special needs. When it happens, it is something that needs combined efforts to support one another. These women get tortured the more when we (men) run away,” Niwagaba stresses.

“From the time our son was born, I stayed with my wife in the hospital and we would look after our son in shifts. She would go for studies as I attended to the baby. I had to put my work in Uganda on hold and travel to Belgium. I can feed and bathe the baby and do everything he needs,” Niwagaba adds.
As World Down Syndrome Day (March 21 ) approaches, Niwagaba’s appeal to men is for them to understand that challenges they experience in marriages are a combined effort, but not a one personal issue.