kalongi - Stillbirths or Siamese babies might be agonising but the nightmare of giving birth to a baby with a heart defect, perhaps, is more traumatising to parents especially those living in developing countries.
For some, an inborn heart defect is about life and death. It is about the meaning of life and the meaninglessness of existence.
In countries, such as Rwanda, the agony often results into an anxious long-wait for a costly and delicate operation to correct the disorder.
Such is what Jean Baptiste Tuyizere is going through with his beautiful one-year old daughter, Angel Ineza Mugisha.
The mother, Alice Vumiriya, is most of the time at school in Kigali, because she is still a high school student.
Often times, Ineza gets breathing complications and she has to be hospitalised and kept on oxygen life support for some time. As such, she keeps in and out of hospital.
Seated on a hospital bed in the paediatric ward at Kibuye Hospital, Vumiriya gently holds her little baby trying to keep her in one position as she narrates Ineza’s life-sobering ordeal.
“Angel has never had a good life. Sometimes she stays awake all night long as she struggles to breathe normally,” a visibly distraught Vumiriya says, struggling to enunciate her words.
She expresses regret as if to suggest she did something terribly wrong during the pregnancy that caused the heart defect.
In most cases, Vumiriya spends a day worrying whether her daughter will be alive the next minute. At first sight, you realise that she has not enjoyed the usual happy times of a young mother. But she has refused to give up hope.
“We continue to move on; you never know.”
Neither has Ineza enjoyed her days on this planet.
She has had a retarded growth as a result of this condition. Looking at her, she could pass for a four or five-month baby.
Her father, Tuyizere, recounts incidents when Ineza could have easily died had it not been for the merciful hand of God.
“One day, I playfully held her up in the air and she instantly became unconscious for a few seconds. I became nervous and worried because it seemed like she was going to die,” a sober Tuyizere said.
Medically, a hole on the partition wall between the two sides of a heart means that blood containing oxygen in the left side of the heart is forced to mix with blood without oxygen in the right side.
With this condition, too much blood passes into the lungs (via the pulmonary artery) and too little to the body tissues (via the aorta).
Medics say holes on the heart are the commonest forms of inborn heart defects. The term refers to the defects in the partitions (septums) which separate the two sides of the heart.
However, most of the time, doctors don’t know why they develop. Heredity may play a role in some heart defects, but it is on very rare occasions more than one child in a family is born with a heart defect.
Born on 21st January 2011, Ineza deserves attention because her condition can be corrected. The hole on the partition wall between the two sides of her heart can be fixed.
With present technology, amidst this unpredictable life, there is hope, medicals say. Well, at least, there is something. There can be an oasis of hope, humanity and redemption.
According to Dr Joseph Mucumbitsi, a cardiologist at King Faisal Hospital, a programme is underway to help people, especially children, who need cardiac surgery.
“Each year a special team of foreign surgeons carries out operations at this hospital but plans are underway to establish a centre for cardiac surgery,” Mucumbitsi said.
Lease of life
He reckoned the centre would greatly assist those who need regular and proper cardiac maintenance and treatment.
Mucumbitsi said that community outreach programmes have been considered to support rural-based hospitals, which hardly offer such highly-sophisticated services.
One success story is that of another young girl, identified as Ingabire Comfort Kwizera, who was born on August 1, 1996, at King Faisal Hospital with a similar condition.
Luckily, she underwent an operation eight years later at Leipzig Herzzentrum (Leipzig Heart Centre) in Germany and her life has drastically changed.
Her tale is an unusual childhood punctuated with real low moments that many children only hear about in stories.
“I am so lucky not to have died at a tender age before the operation which gave me a new lease of life,” a joyous Ingabire said.
Prior to her operation, she is said to have exhibited growth complications but now her condition has greatly improved.
Ingabire is now living the joy that comes with the healing of a child who was born with a hole on the heart.
Ineza’s parents say her name is on the list of kids, with such defects awaiting a government-sponsored operation abroad.
“But doctors told us that she can only be operated on after she has turned three years,” the mother, Vumiriya, said, hoping her kid will continue to be brave until that time.
The New Times later learnt that the cardiologist who saw the child is Emmanuel Rusingiza of Kigali University Teaching Hospital (CHU-K).
Efforts to talk to Dr Rusingiza were futile as he is said to be on a working visit to the US.
However, Dr Mucumbitsi promised to verify whether Ineza was indeed among the children on the waiting list.
“The next screening will be around September or October; I am not sure whether she is on the list but I will check through my database,” he explained. By press time, it was not clear whether Ineza was on the waiting list.
Mucumbitsi, also the president of Rwanda Heart Foundation, could not comment on whether Ineza needed to wait for two years before the operation, insisting he had no idea about her exact condition.
“I can only comment after I have read her medical file, the timing of the operation would depend on the nature of her condition,” he explained.
To many people, getting healed of an inborn heart defect is simply a miracle because most children, born with this condition, hardly live beyond the age of five.
But after an expensive operation, like the one Ineza requires, the experience instantly becomes a strange but true story.
Meanwhile, Ineza’s parents continue to be hopeful their first born will finally be a happy, healthy kid.