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Battle to save our daughter’s life

Evelyn Makena @evemake_g

Inside a paediatric ward at Mbagathi Hospital, Nairobi, machines beep periodically, nearly drowning cries of distressed infants.  Amid the noise, Milena Muthoni lies calmly in her mother’s arms seemingly exhausted. There is little movement from the five-month-old baby whose expression is restful, but laden with pain. Milena does not let out a sob; instead she stares at her mother intently.

Purity Gateti, her mother, holds her gently, careful not to dislodge oxygen tubes strapped across her pale cheeks right through her nose as a group of doctors and nurses mill around their bed. 

“We cannot treat the baby here. She needs advanced treatment only available outside the country,” announces Dr Morris Muhinga, Cardiothoracic surgeon, after examining the baby.

A month prior to the examination, baby Milena was diagnosed with a complex congenital heart disease due to the incomplete formation of valves in her heart.

Baby Milena also has two holes within her heart that have made breathing difficult. According to Dr Muhinga, the holes in her heart have led baby Milena to develop severe pulmonary hypertension, a type of blood pressure that affects arteries, heart and lungs.

When Milena was diagnosed with the condition at Kenyatta National Hospital, doctors advised the parents that her treatment would only be feasible outside Kenya.

On average, the treatment would cost the parents between Sh1 million and Sh1.4 million in India, where the parents were referred. Determined to get a second opinion and hopefully a cheaper option, the parents have been visiting different hospitals.

At first, they went to Mater Hospital where the baby was admitted for four days after developing pneumonia. Doctors at Mater maintained that the treatment for her condition was not available locally and instead put her on medication to manage the condition.

Clinging onto hope that there could be a local solution to their babies suffering, Milena’s parents went to Mbagathi  Hospital following a tip-off that there were visiting doctors from the US who could probably help. The verdict delivered by Dr Muhinga momentarily dashed the parents’ relentless optimism to see their daughter gets well. “We hoped she could be treated here,” says Purity looking defeated.

According to Dr Muhinga, the treatment for the condition involves open heart surgery. Though Kenya has the expertise to conduct the procedure, it lacks certain crucial resources to manage patients’ post-surgery treatment. “For instance, the surgery requires that patients be put on nitric oxide to lower pressure after surgery. It is not available,” he says.

Purity, 34, a graphic designer and her husband, David Nyaga, 35, freelance accountant are not only burdened by the agony of watching their little one in pain, but are also weighed down by exhaustion and expenses. For the period Milena has been ill, the family has spent up to Sh250,000 in admissions, medication and tests.

27The family grapples with the burden of raising Sh1.4 million to fly the baby to India. Time is slowly running out for them. The doctors have recommended that the surgery be done before she turns one, for higher levels of success.

Milena’s health complications began when she was born in Nazareth Hospital, Kiambu, on March 1 this year. Immediately after birth, Milena was whisked to the neonatal unit and put on oxygen for 10 days after developing breathing complications. After getting discharged she went home and embarked on raising her baby.

At three months, the mother of two noted that her second born was slow on hitting milestones. At that age, she noticed her leg support was weak. She was also not very keen on breastfeeding and had difficulties breathing.

The mother went to Getrude’s Hospital, Donholm where she usually went for the clinics and told the doctor about her concerns. Doctors advised that she waits until the baby turns six before determining what the problem was. When Milena’s health continued to deteriorate, Purity was advised to go for an echo test at Kenyatta Hospital where the child’s condition was diagnosed.

The financially strained parents remain optimistic that with help of well-wishers they will raise the hefty amount, and have their baby treated. Under David’s NHIF cover Sh500,000 will be paid by the insurance while the family will pay the rest.

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