Celebrating the miracles and milestones of premature babies

Like any mother, Mrs Jacinta Ochieng wanted nothing more than to take her children home, all five of them, even though their birth had surprised her- she thought she had been carrying just one.

Instead, she had to watch her babies, born seven weeks premature, die one by one, their fragile under-developed lungs unable to fight off the ravages of pneumonia.

Pregnancy and childbirth have long been described as a miracle, but sometimes the miracle ends too soon.

The result is babies like Jacinta’s, born too early, too weak and too small to make it out here in this big bad world on their own.

NOT THE FULL STORY

The births and subsequent deaths of the quintuplets is however not the full story of premature babies in Kenya today.

Many of them survive, but the reality is that most of those that do are helped along by modern technology and superior care only available in top private hospitals.

The parents of these children recognise just how lucky they are, some having had to beg, borrow and steal to scrape together enough money to access the right hospitals.

Tasha was born last year at 27 weeks weighing 550 grammes, slightly heavier than a loaf of bread.

And when she recently toddled into her paediatrician's office with her hands raised, asking for a hug, tears welled in the doctor's eyes.

After life in the womb, the air in the hospital incubator felt different. She had been ushered into a strange world too early, but she fought on. Today, she shows no sign of the fragility that marked her entry into the world, and her subsequent admission into the neonatal intensive care unit.

“She ran towards me, eager for a hug. I am excited because she is one of my ‘friends’ who are now grown up and running around,” said Dr Roseline Ochieng, Tasha’s paediatrician.

And as the World Prematurity Day was marked this week on 17th November, Ruby Kimondo leads parents in celebrating milestones of preterm babies who are born before 37 weeks of pregnancy are completed.

PREEMIE LOVE

Ruby’s first, second and fourth born sons were born early and this encouraged her to form Preemie Love, a support group that group also conducts outreach programmes in hospitals and communities to create awareness on pre term births and how these children can have an equally fulfilling and rewarding life if they receive specialised treatment and care.

These babies need specialised treatment until they are stable- above two kilogrammes- and healthy enough to go home.

“Seeing them in incubators, with intravenous lines on their tiny hands, oxygen masks on their faces and the daily ventilator machine beeps was tough,” said Ruby. 

“My first born was born at 28 weeks weighing one kilogramme, the second was born at 30 weeks weighing a kilogramme as well. The last born was born at 34 weeks but needed to be in hospital for two weeks,” she added.

Today, Ruby and her husband, Mark, celebrate their sons’ milestones. Leo, Lex and Lenny are healthy children aged 14, nine, and two years respectively.

FRAGILITY OF LIFE

Mark says their babies’ experience in hospital made them appreciate the fragility of life.

“Our boys represent hope and the spirit of rising above challenges,” Mark added.

Christine Okoko, a specialist nurse at the Aga Khan University Hospital, says giving birth to a preterm baby should be guided by a multidisciplinary hospital team.

She added that the delivery of term babies can be pre-planned if the mother has a life threatening condition but some parents do not have this kind of preparation.

She describes the need for unconditional round-the-clock care for the babies.

‘BABIES ARE MY BOSSES’

“These babies are my bosses. I do everything to ensure they are always healthy and comfortable,” said Christine.

Hawa Idris gave birth to her daughter at 30 weeks, weighing just 1.2kg. She watched her daughter Zena fight for her life, attached to tubes. She described the anxiety.

“She was too tiny and brittle. She lost about 200 grammes two days after birth. I couldn’t even hold her,” Hawa says.

Today, her little fighter is nine months old and has met her milestones. For instance, she can stand, but with the support of furniture.

“Our happiest day was taking baby Zena home . She is a miracle,” Hawa added.

Theresa Denge, 28, gave birth to premature twin boys, Michael and Gabriel, in a private hospital but transferred to a public hospital when the bill began escalating.

However, she lost Michael to a feeding accident, a death she blames on insufficient instructions given to her about how to care for her preterm babies.

“I gave birth at 28 weeks and my boys weighed 1.3 and 1.2 Kgs respectively. I was expected to feed my children without prior training,” Theresa says. She believes Michael’s early death could have been prevented.

“I have forgiven them but mothers should be given special classes on taking care of their pre-term little ones.”

Gladwell Gachina gave birth to her son at 30 weeks in 2015, after her waters broke prematurely while shopping at a supermarket in Nairobi.

“The doctors put me on bedrest for one week but they later realised that the amniotic fluid was not sufficient to support the foetus anymore,” says Gladwell.

NOTHING SHORT OF A MIRACLE

She said the birth of her 1.5kg son is nothing short of a miracle. Today, her son is almost three years old, has met all his milestones and according to his mother, holds great conversations with peers and adults alike.

And Diana Akoth’s son, Kendrick, was born at 30 weeks weighing 1.6kg with a heart condition.

“He had pulmonary stenosis, a heart condition where the valve that influences the blood flow from the heart to lungs, slows the blood flow. In July this year, the surgery was done and Diana describes her son as a playful two-year-old boy.

Even as these parents celebrate their babies’ lives, they remain cognisant of the prohibitive cost of the specialised care in both private and public hospitals, which remains the greatest challenge in Kenya.

Most private insurance companies are non-committal on paying hospital bills for babies born too soon leaving most parents at the mercy of public fund-raising.

Hawa’s hospital bill was Sh690,000 for the five weeks of treatment, Theresa paid Sh 500,00 for 10 days and Gladwell parted with 700,000 for the one month of hospitalisation.

“The private insurance may not fully cover the cost of treatment leaving the parents to fundraise for the discharge. Some babies are detained hospital and catch new infections as they wait for their parents to raise the money,” Ruby noted.

The writer is the health and medicine Editor at The Conversation Africa.