alexa Birth disorder: Unpleasant surprise for parents - Daily Nation

Birth disorder: Unpleasant surprise for parents


Pain for parents of children born with diseases

At least 303,000 newborns die within four weeks of birth every year, worldwide, due to congenital anomalies

It’s exactly 10.35am when lead surgeon, Dr John Kariuki, crosses his hands as he watches the small heart he shut down 45 minutes earlier start pumping.
The rhythm is still not normal, so Dr Kariuki delicately massages five-year-old Angel Waithaka’s heart as the rest of the team looks on. The next five minutes seem like forever, but it might as well be for the young girl whose life is about to change.
The success of this surgery means Angel, who has been in and out of various hospitals in Kiambu and Nairobi, will finally have a shot at a healthy life.
When the neurosurgery team at Nairobi Hospital has restored blood flow to the heart and the heart goes back to its normal rhythm, it is all hands on deck.
“When it beats like that then we know there is no blockage. We have to start reinforcing every hole made during the bypass,” says Dr Kariuki.
Shutting down the heart for repair is not out of the norm for this team which began the process an hour earlier. The functions of the heart are transferred to a heart-lung machine which takes over pumping as it moves blood away from the heart. A specialist oversees the machine throughout the procedure.
At the beginning of the surgery, Dr Mark Gacii, the anaesthetist, injects Heparin — a drug that will thin Angel's blood to prevent it from clotting.
He then begins a process known as cardioplegia, which is the intentional stopping of Angel’s heart for about half an hour while the surgeons begin mending the hole in her heart.

DELICATE REPAIR
“This process allows the surgeon to operate on a heart that is not beating and that does not have blood flowing through it. During the procedure, a tube is used in the heart to drain blood to the machine. The machine removes carbon dioxide from the blood, adds oxygen, and then pumps the blood back into the body,” explains Dr Gacii.
Dr Kariuki takes some iced slush and pours some on her heart which lowers her body temperature and slows down her metabolism. It also reduces her bodies need for oxygen.
When her heart finally stops beating, everything is still for the delicate repair of the hole in Angel's heart to begin.
It is 9.50am when Angel’s heart is temporarily put out of service by the neurosurgeon team and it is at this point they can see the hole in Angel’s heart. “The hole is not as large as we anticipated,” he says to the team.
True to his word, the hole is barely the size of a pea and all they need is to fill it with a small lining of Angel’s heart called the pericardium.
The process looks as simple as doing patchwork on torn clothing, however, there are intricate details that go into ensuring the small opening is completely sealed.
“You have to hold the needle by the waist, kind of like how you do it when dancing with a lady,” Dr Kariuki tells his assistant in jest.

BECOME TEARY

The team is in constant communication and while they are sometimes barely audible, they seem to have developed a rapport that would have every member anticipate the next one’s move.
They then start reinforcing every hole made on her body and when they finally sew her up, she is ready to be taken to the Intensive Care Unit (ICU).
Angel is wheeled to the ICU by Dr Gacii and Dr Kariuki who hand her over to the doctor and nurses at around 11.30am.
Her mother, Ms Margaret Wangare, who had gone back to the ward, is patiently waiting to find out the outcome of the surgery.
Ms Wangare is receiving counselling on what to expect when her daughter is wheeled from surgery to the ICU.
She keenly listens as Ms Roselyne Odiembo, a social worker, explains what she should expect when she walks into the ICU.
As she listens to Ms Odiembo, her eyes become a little teary when she is told she will not be able to stay with her child at the ICU and that Angel will not be awake for a day or two after the procedure.
Angel is among the 12,000 children born yearly with a congenital heart defect that can only be fixed through expensive surgery.

CAUSE DISABILITY
Kenya Cardiac Society Vice President Mark Awori says an open heart surgery costs approximately Sh1.2 million in the country.
“While some children have benefited greatly from the National Hospital Insurance Fund that finances close to Sh500,000 for such surgical procedures, most families are still not be able to raise the balance,” he says.
Dr Awori says while Kenya has the capacity to operate and fix such conditions, the country still needs cardiothoracic surgeons who are dedicated to operating on children.
“Two-thirds are noncomplex conditions that can be treated in the country. However, we only have 12 surgeons who also operate on adults. The ideal number of surgeons needed is about 1,000 who are dedicated to children only and distributed throughout the country,” he says.
Kenyatta National Hospital, Moi Teaching and Referral Hospital and the Coast General are the public facilities that do open heart surgeries.
A birth defect or a congenital disease is a condition present at birth regardless of its cause. The World Health Organisation estimates that 303,000 newborns die within four weeks of birth every year, worldwide, due to congenital anomalies. Congenital disorders have also been linked to long term disability and although their cause is majorly unknown, some can be prevented. Studies show the most common disorders are those of the heart and Down syndrome.

DOWN SYNDROME
The Global Down syndrome Foundation states that chances of having a baby with Down syndrome increases with the mother’s age. However, about half of babies born with Down syndrome are born to mothers under 35 years old simply because more young women are having babies.
“Down syndrome has nothing to do with race, nationality, socioeconomic status, religion, or anything the mother or father did during pregnancy,” the foundation states.
Common but not universal features include short stature, round face, almond-shaped and up-slanting eyes and people with it have physical and intellectual delays from birth.
Mr Eric Mandete of Down syndrome Society of Kenya says there are no statistics on how many children are born with the condition in Kenya. He, however, adds that global data shows one in every 800 children are born with the condition. “This condition does not have a cure. However, there so many expenses that come with giving the child a normal life such as eye sight repair, physiotherapy and even finding a school that caters of their special needs,” he says.

CLEFT PALATE
Another common condition among children is cleft lip and palate, which is as a result of an opening or split in the roof of the mouth that occurs when the tissue does not fuse together during development in the womb.
While it can be corrected through surgery, the treatment is often unaffordable, with most parents relying on free medical camps.
The surgery costs between Sh80,000 and Sh120,000 depending on the severity of the case, says Dr Martin Ajujo of the Kenya Society of Plastic and Reconstructive Surgery. “There are cases that require a bone graft and other revisions which can increase the cost of surgery to up to Sh500,000,” he says.
The society has performed 200 successful surgeries for free in the country this year, he adds.
Dr Ajujo says nutritional and supplement deficiencies among women during pregnancy is a leading cause of cleft palate and that is why children from poor backgrounds are diagnosed with the condition necessitating the free surgeries.

CEREBRAL PALSY
Paediatric neurologist, Dr Pauline Samia, of Aga Khan Hospital says approximately two to 10 children per every 1,000 are born with the cerebral palsy. “This is a permanent disorder that occurs when there is an injury to the developing brain in the uterus, during delivery or immediately after the child is born. The effects are life long,” she says.
However, she says, interventions can be done while the child is young to ensure the condition does not progress.
The interventions vary from one child to the next and some need surgery while others need occupational and physiotherapy.

SICKLY CHILD
For parents of children with congenital defects the cost and emotional burden can be immense depending on the severity of the condition.
For Angel’s mother, the hospital visits have been countless. She says she hopes this will be her daughter’s final stay in hospital.
“Angel has been sickly since birth and it was at Kiambu County hospital that we were told she had three holes in her heart. The news was heartbreaking at first, but they gave us so much hope when they said that there were several interventions that would make the holes close spontaneously,” she says.
When two holes closed up, the family was ecstatic and relieved, feelings that would be short-lived. “The third hole did not close and we went to the Thika Level Five Hospital where we were immediately transferred to the Kenyatta National Hospital. We attended cardiology clinic there for three years,” says Ms Wangare.
Angel had to go on with the clinic because the surgery needed to fix the hole was way beyond what she could afford.
The congenital heart disease Angel had is the most common form of birth defects in children and occurs in one per cent of all live births worldwide, affecting over 40 million people globally.
Ms Wangare explains that because the hole was affecting her lungs, Angel was often diagnosed with pneumonia and had poor weight gain.
The disease left her worn out and when a doctor at Kenyatta referred her to Dr Kariuki at Nairobi Hospital she was hopeful things would finally look up.
“We were then recommended to the Heart Fund Donation and Angel was one of the beneficiaries of the 2018 Charity Heart Fund,” says Ms Wangare.

COST OF THERAPY
Mr Patrick Ngari, an occupational therapist, says parents of children who need occupational therapy or physiotherapy will typically be required to pay anything from Sh2,000 to Sh10,000 for a 45-minute session.
“We carry out the sessions thrice a week. The cost is dependent on the severity of the condition and the equipment required,” says Mr Ngari.
Mr Mandete says children with Down syndrome also require speech therapy and there is a scarcity of specialists. “The sessions do not cost less than Sh4,000,” he says.
While they do not have to go to special needs schools, they require special attention.
Public schools are mostly underfunded and that means the special attention required for the children may not be offered, leaving parents with a costly private school as the only option.