Having a premature baby takes a huge emotional, physical and financial toll on everyone involved. The birth often leaves parents shocked, confused, abandoned, powerless or guilty.
There is a lot of anxiety about what the future holds for both the baby and the parents.
According to WHO statistics, 15 million babies worldwide are born preterm and more than a million die as a result.
Some babies who survive often have lifelong health problems such as cerebral palsy, vision and hearing loss, and intellectual disabilities.
Irene Tumusiime, a mother of four children aged 20, 18, 14 and 4 says she is among the lucky ones to have a surviving pre-tern child. Her youngest child Gabe Rukiri Tumusiime, nicknamed “papa” was born two months early. He is now four years old and the apple of his mother’s eye.
During the interview at the family’s residential home in Naguru, a Kampala suburb, Rukiri sat next to his mother sucking his thumb, making playful noises from time to time while asking his mother numerous random questions.
“He is quite a handful and always keeps me on my feet,” Tumusiime tells me.
Unlike his three older siblings, Rukiri’s birth was unexpected. It all started after Tumusiime found out she was expecting at four months.
“The age gap between my third and fourth child is 10 years. During this time, I was not on any contraceptives and resolved that God probably wanted me to have only three children. This is why the fourth pregnancy came as a surprise to me,” she says.
She visited a physician who performed a pregnancy test and confirmed the pregnancy.
“I was a little shocked and doubted the results. I was 39 years at the time and felt a little old,” she says.
To erase her doubts, Tumusiime opted to undertake an ultra-sound scan, an imaging test aimed at checking the baby’s development inside the womb.
“The scan proved that I was four months pregnant. I was scared and did not know exactly what to do,” she says.
She shared the news with her husband, Alex Tumusiime, who was very delighted at the prospect of having a new family member.
“He was very excited and could not wait to hold the baby in his arms,” she says.
With the support of her husband, Tumusiime came to terms with the pregnancy.
At 27 weeks of the pregnancy (seven months), Tumusiime started experiencing unusual symptoms.
“A watery fluid started discharging from the vagina. Sometimes I found my knickers very wet as if I had passed urine,” she says.
She sought medical intervention at Kampala Hospital where a number of tests were conducted and it was confirmed the watery discharge was amniotic fluid that protects and supports the baby as it grows inside the womb. Tumusiime did not ask the doctor what could have caused the leakage.
“My condition became very critical and I was admitted at the same hospital. I was put on bed rest but after three weeks, I delivered the child via C-section (a surgery performed to deliver a baby),” she says.
The baby was born at seven months on July 5, 2013, a month to Tumusiime’s 40th birthday. He was immediately taken to the neonatal intensive care unit that specialises in caring for premature babies. Tumusiime broke down when she saw her baby for the first time.
“I went to the unit to see him after the operation. He was very tiny, almost the size of a cup. His fingers were like grass pellets and the eyes could hardly be seen. The scariest bit was seeing his body hooked to different tubes. I became psychologically traumatised,” she says.
It was, however, the support of her family members, friends, and relatives that comforted her through the ordeal.
“Having people around was very helpful. They helped take my mind off the traumatising experience. The team of nurses who eventually became my friends assisted in tending to the baby especially when it came to feeding,” she says.
The little boy was feeding using a tube inserted through the nose connected to his stomach. He could not breastfeed because the nipple was too big for his little mouth. Tumusiime would pump the milk into a cup, hand it over to the nurses who would feed the baby through the tube. Both mother and baby were finally discharged from the facility on July 29, 2015. This was after spending close to Shs13m on treatment. Part of the expenses was covered by insurance while the remaining balance was acquired through savings and a loan.
Life at home
Back at home, Tumusiime had to turn one of the bedrooms into a nursery for the baby. This was in order to limit many people getting access to him.
“Premature babies are very delicate humans and are predisposed to getting infections. I could not allow that to happen,” he says.
Unlike in the hospital where she was often surrounded by nurses offering to help, Tumusiime now had to tend to the baby alone. It was a stressful time and at some point, the self-employed businesswoman thought she was losing her mind.
“I was always awake, day and night with hardly any time to rest. For the first two weeks after bringing him home, I had to continue feeding him through the tube which process took about 45 minutes. The feeding had to be done every two hours,” she says.
Kangaroo mother care was also essential for the baby. It involves a mother closely carrying their baby, skin to skin, for a number of benefits including maintaining the child’s warmth as well as regulating their breathing and heart rate.
“In case I was too tired, I would hand over the baby to either his sister (14 years) or father to tend to him,” she says.
After two weeks, the feeding tube was removed by one of the nurses from Kampala Hospital and Rukiri then had to be fed either by the breast or bottle. Tumusiime had to ensure that the baby bottles and pumps were always sterilised, washed thoroughly well and kept in a clean dry environment.
Over time, the little boy began to grow and hit his milestones. At six months, he was crawling, walking at 10 months and started to talk by 12 months.
The only health setback the parents got was when Rukiri rapidly lost weight at five months and the doctors said he had anaemia (a low red blood count) and suspected it was sickle cell anaemia.
“My husband and I were so relieved when the tests came back negative for sickle cell anemia. However, they confirmed he had anemia which could have been caused as a result of the inability of his body to absorb iron,” she says.
Tumusiime was then advised to give the boy supplements in form of medication. Also, she had to introduce particular foods quite early in order to boost his iron levels. Some of these included millet porridge, egg yolk and vegetable soups.