5 minute read
Hope after despair for children with congenital heart diseases
NEWS
Gertrude’s Hospital Foundation: Hope after despair for children with congenital heart diseases
Advertisement
Master George and his mother resting at the holding ward moments before going in for a cardiac surgery
Nothing had prepared Ashley Maria for the shock of discovering that there was something wrong with her unborn baby’s heart. She was seven months pregnant when her doctor diagnosed her daughter Anne Staicy with Tetralogy of Fallot (TOF), a combination of four related heart defects that commonly occur together.
As she narrates, the news of her daughter’s condition was followed by another devastating one, her daughter needed to undergo a surgery after birth to increase her chances of survival. The remaining two months of Ashley’s pregnancy were clouded by fear and anxiety as she waited for the birth of her baby. However, when the baby came, the doctor recommended that the surgery be done when she was at least six months old.
“The baby needed to put on weight before they could perform the surgery,” she explains. At eight weeks old, when baby Anne Stacey was 2.7 kilogrammes, she went in for her first open heart surgery. “Things didn’t go as planned as we would spend millions of shillings treating our daughter. There were multiple times the doctors prepared my husband and I for the worst. Anne was in the hospital’s Neonatal Intensive Care Unit (NICU) for two months after the surgery after which she was discharged and put under the care of a nurse and fed with the help of a tube,” Ashley narrates. In the first two years of her life, Ashley always feared for how her daughter’s life would turn out. However, today, Anne is a thriving six-year-old and in kindergarten. She will be getting her first pulmonary valve transplant soon. “My daughter looks healthy and full of energy. You can hardly tell she has gone through such a difficult childhood, unless you see her scar or feeding tube,” Ashley says.
Hole in the heart
Sam Muoki was also born with an atrial septal defect (ASD), a congenital heart disease that refers to being born with a hole in the heart located between the upper chambers (atria). His father, John Mwangangi, says they noticed this when Sam was nine months old. “He had an abnormal growth where he couldn’t gain weight like a normal child.
NEWS
At first, we thought it was usual, but his heartbeat was too loud that we could hear it, he had difficulty breathing and would get tired when feeding. We made several visits to the clinic to establish what was wrong with him, only to be told that he had a hole in the heart,” says Mwangangi. Mwangangi adds that the most insurmountable challenge was to raise funds to cater for the corrective surgery, to the tune of Sh1 million.
Ann and Sam are just a small bit of the number of children who are diagnosed with the different types of Congenital Heart Disease (CHD) every year. The World Health Organisation (WHO) reports that 5,000 children require CHD treatment in Kenya each year. A 2019 report by Frontiers in Paediatrics, an official journal of the European Academy of Paediatrics (EAP), indicated that on an annual basis, Kenya performs between 120 and 150 congenital open-heart operations, with a similar number of congenital catheters interventions. The report also pointed out that approximately 50 to 100 additional patients receive treatment outside Kenya, most of whom are self-funded, but this does not include those with rheumatic heart disease, which accounts for a significant percentage in Kenya and Sub-Saharan Africa. The vast majority of these children receive suboptimal or no care at all.
Whilst the load of CHD is immense in Kenya, Gertrude’s Children’s Hospital recently initiated a free heart screening exercise through its foundation. 79 children were found to require surgery, 25 of whom have been operated on so far while 28 children are on follow up and on medication. Dr Carol Waweru, Gertrude’s Hospital Foundation manager, says that the free heart screening campaign was inspired by the fact that most children with CHD are not correctly diagnosed. As a result, a majority of them end up leading a poor quality of life. They were also inspired by the increased cost of care delivery due to repeat hospitalizations.
“The majority of the children that came when we were doing the heart screening programme already knew that they had a heart condition and wanted free heart surgery. One of the main contributors to poor access to cardiac surgery and associated care for children with CHD is inadequate diagnosis as a result of inadequate skills and technology to support the same across the country. Gertrude’s Children’s Hospital conducts periodic screening exercises to help diagnose these children in the local community and link them to definitive treatment,” says Dr Waweru.
Dr Mark Awori, a paediatric heart surgeon at Gertrude’s Children’s Hospital, says that cardiologists get frustrated in Kenya, because of lack of facilities offering open-heart surgeries. “That is the problem we are trying to address with Gertrude’s Children’s Hospital,” he states.
Complex surgeries
Dr Awori says that while undertaking the screening, the most common cases reported were, such as that of Sam - a hole in the heart. Gertrude’s Children’s Hospital is investing to develop capacity to treat complicated cases. “A third of the holes in the heart cases are complex. Locally, we perform surgery on two-thirds of the cases. We want to scale up and do more complex surgeries,” he says.
“The most complex case in CHD is the one on single ventricles where half of the heart is not formed all together and one has only two valves. You can save these babies with early surgeries. They need very many surgeries even when they grow up. The results are worth it by the time they turn 10 to 15 years,” he adds.
Treatment at home
Dr Awori says that developing countries face the challenge of funding congenital heart surgeries. “We are looking at building the confidence of Kenyans with our facilities. The public will also help us by talking positively about our services as a country. Governments, corporations and individuals can help us reach this milestone,” he says.
Nonetheless, Dr Martin Mbiata, a Resident Cardiologist at Gertrude’s Children’s Hospital, notes that the intervention by the government bodies, such as the National Health Insurance Fund (NHIF) and non-governmental organisations has made treatment affordable. “NHIF has been in the picture as they give Sh500,000 on the surgery that normally costs Sh1.5 million. They cater for a-third of the cost. The Rotary programme will also cater for one-third, so you only look for the remaining Sh500,000 covered by the hospital foundation,” he confides in conclusion.
