Kenya: Brave Fathers Speak Out On Long Journey With Pre-Term Babies

2 December 2017
opinion

Premature birth is a world you probably only hear about until a personal experience brings you face-to-face with the fragility of life.

Lifestyle spoke to four brave fathers who, regardless of facing baptism by fire after their spouses suffered pre-term births, have vowed to remain strong for the sake of their loved ones.

From moments of extreme anguish to instances where they celebrated, the fathers have gripping stories to tell as they describe their shock as they entered neonatal intensive care units of hospitals, where they had to peep through an opening to see their little ones.

The fathers are part of a group known as Preemie Love, a support organisation that conducts outreach programmes in hospitals and communities to create awareness on pre-term babies and how to take care of these children through specialised treatment and care.

The programme was started by Nairobi residents Ruby Kimondo and her husband Mark after they gave birth to pre-term babies. Ruby's first, second and fourth born sons were born before their full term and this encouraged her to form the group.

"This is to encourage parents that they were not alone and that when they talk about it, they get relieved," says Ruby. Below are the fathers' stories.

Lawrence Juma, 29

Mr Juma and his wife Cindy Odhiambo have had two pre-term babies, something they say has been a big bother to them, making them wonder whether something could be wrong with them. Mr Juma gave Lifestyle a glimpse into his journey of raising two fragile children.

"My wife Cindy has had tough pregnancies, with both times being confined to bed rest for months. The first one, as a field officer, she spent a significant time travelling on motorbikes on rugged terrain. Twice, we almost lost the baby. She had to work while at the same time keeping the baby safe.

"She was constantly sick, spotting and nauseated. She hardly ate. It felt punitive.

"We have two boys, both born pre-term. The first, Bacil Junior, was born on January 20, 2016, at 30 weeks, four days -- ten weeks shy of the ideal 40. He weighed just 1.5 kilos and stayed incubated for three weeks at the Aga Khan Hospital in Kisumu. His eyes were still fused shut.

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

"My son fought for every breath, facing daily challenges caused by a heart defect, bleeding in his brain, jaundice and a heart murmur. The day of Bacil's birth, I cried when I saw how small he was. So small, so helpless yet so innocent.

"Twice, we had traditional birth attendants massage Cindy and try to keep the baby in her. It seemed like she was going to deliver early regardless.

"It started as strong abdominal pain, accompanied by some spotting. When we got to the hospital, the gynaecologist informed us that she risked a miscarriage and they booked her overnight for management and further observation.

"Later that night, the pain subsided. And we thought the danger had passed. Around 9am, as I was heading to the hospital, she called. The uterus had ruptured and she needed emergency Caesarean Section to save the baby. She was wheeled to theatre at 12.30pm and Bacil Jr was born at 3pm.

"The second pregnancy was just as tough. I didn't have a job at the time and she had been transferred to Nairobi.

"We had a small baby and, unexpectedly, we were expecting another. When I got the job I have now, I was required to move to Rwanda. However, she had a little baby and a pregnancy. And we had never stayed apart since our marriage in April 2015.

"Naturally, I was worried. I feared a repeat of the difficult pregnancy she had before. Our fears were right.

"By the fourth month, we were informed she had an amniotic band (a congenital disorder caused by entrapment of foetal parts, usually a limb or digits), which had the risk of severing the baby's limbs. We prayed like never before. Around June, I came back home. I moved her back to Kisumu to be close to our family.

"She had been directed to be on permanent and unpaid bed rest until she delivered.

"Being on bed rest is a real feat of physical and mental endurance. When you start it, you have no idea when it will end, you hope for the safety of the baby as long as possible. She never complained about any discomfort because maybe she wanted to prove that she was strong.

"She sacrificed her body and mind in her desperate bid to protect her unborn babies.

"We decided to go for a scan that revealed the extent of the amniotic band. It was a real threat to the baby's limbs. I asked a lot of questions, like why we had to endure all this. But as a man, I also had to be strong. She needed me to be strong. We prayed. We tried to keep safe.

"On Sunday, September 3, 2017, coming from church, she went into labour. We rushed to Aga Khan, and she was admitted. The cervix had begun to dilate, yet she was only 33 weeks. Our gynaecologist at both times, stopped the labour for 24 hours to administer steroids on the baby's lungs, which had not fully developed.

"She went to theatre and that's how Gerald Junior was born. He was born at 2.1kg. He stayed in the incubator for a week, then was released to come back home with us. He turned 10 weeks on November 21. The sheer smallness was scary.

"I learned a lot on how to take care of them. I had got a bill of Sh850,000 but I needed to show my love and support to Cindy and the children.

"I took a paternity leave and being that she was still healing from the operation and couldn't do much, I woke up early, made breakfast for them, did their laundry and cleaned up. Then I went to work.

"During lunch, I came back and prepared their meal then in the evening, after work, I would go to class, return with supper and prepare it. It was a routine I got used to soon enough, but not before I realised the value of a woman in the home.

"When my son Basil spoke for the first time, the word that came out was "Baba". I was over the moon. I recall we had to go to a management retreat, and I was so happy I shared it with the team. Of course, Cindy was jealous.

"When he made his first step trying to walk, my heart almost burst with joy. It is a feeling so good I can't describe it.

"Today my two sons have a great sense of personality. The two love to eat and they are very jolly. In fact, if you see them today, it would be hard to imagine that, when they were first born, they could not be carried. But it's true. They are a living testimony."

Richard Odira

Mr Odira describes his daughter Janelle as a "fighter". She was born weighing 700 grams and once stayed in the intensive care unit of a hospital for 10 days. He shares the journey that involved singing to her in her bed.

"Being a father of a pre-term baby is quite heavy in that you have to bear the weight of the mother, baby, doctors, and the bills.

"Our journey started a while ago. My wife has gone through two difficult pregnancies which the babies did not manage. On this third pregnancy, we took all precautions. We had to see a specialist who was helping her. She was being checked regularly.

"On reaching 25 weeks, she had premature labour. I had left for the barber shop and was called back. Her membrane had broken and she had lost amniotic fluids.

"We rushed her hospital. The weight of the baby was not very good. One of the doctors suggested that we terminate the baby but we sought a second opinion. She was given two injections which were to help the baby's lungs to mature.

"I prayed like never before. She was taken for scanning and wheeled back to the ward and on checking the scan, the amniotic fluid, was low at 0.1 which was not good.

"We had to wait. We were given foetal check and told that when the baby kicks we were to tick. I stayed around the whole night.

"We went for another scan and to our surprise, the water had gone back to 0.4 which was a miracle.

"On the third day, my wife's sugar level was very high. On June 1, 2017, when we were ready to be discharged, we were told to find out if she was diabetic. We went for a sugar test which took around five hours.

"At around 5pm, my wife shouted that the baby was coming and we wheeled her to a private room and she delivered. Our miracle baby Janelle Malaika Odira came out crying.

"The doctor said her lungs were not developed and she was wrapped in a thermal blanket. She was too small. She weighed 560 grams, slightly heavier than a loaf of bread. She was rushed to the nursery and a neonatal doctor came in.

"I rushed back to the nursery and found my sister crying. I found myself crying as well. I peeped through the nursery and I could not see my daughter.

"The doctor came out and explained that they could see she had several disorders including jaundice; that she was taken to ICU (Intensive Care Unit) and placed in a life support machine because she had difficulty in breathing.

"She was super-small and was being pumped with many fluids that the doctor did not know whether she would make it.

"She was being given antibiotics through pipes, was given water and nutritious fluids and we were told that for the baby to survive, she needed her mother's breast milk. I rushed out and bought a breast pump.

"She took them and the next days, we got good news from the nurse that the milk was digested and that teh baby had excreted.

"Being a micro pre-term, Janelle had difficulty in getting in the oxygen. We had to get her off oxygen and her heart rate started increasing to 260 pulse which was alarming. We called cardiologists because the doctors thought she had a hole in the heart.

"After several tests, it was discovered that she did not have a hole in the heart but had problems with the eyes, for which they conducted a surgery. She was manually operated on, three times.

"We discharged her but another challenge was that I did not have Sh2.8 million to foot the bill. Miraculously, the hospital agreed for a collateral and we were out of the hospital and another journey started.

"After one month, she developed complications in the left eye. She had to go for another surgery and the challenge was getting an anaesthetist who was going to put my child to sleep and bring her back.

"It was financially straining as we needed half-a-million shillings to have the surgery done. She had to put on corrective glasses for an hour a day for five days.

"We literally avoided guests because we wanted minimal touch on her. Janelle's journey taught us how to be patient and appreciate the fragility of life.

"My baby is now fine and when I saw her first step, it was magical. I called all my circle of friends and celebrated."

Ken Wabuti, 32

Mr Wabuti, an accountant, is the father of a nine-month old boy who was born eight weeks earlier than expected. He says the experience with the boy has taught him to be very patient; not to rush anything for the sake of it.

"My wife's pregnancy was fine, it had no complication. She used to go to the clinic and there was only one time that she went and the position of the baby was not okay. It was adjusted and she was fine.

"One time she was in the kitchen preparing a meal, then our first born, who is four years, started shouting at the mother that she was bleeding ("mummy unatoka damu"). The blood was all over. I thought that she had an injury but I realised that it was something serious and it was worsening.

"We took her to Gomo medical clinic in Changamwe, the doctor reviewed and said she had complications. She was wheeled to the theatre. I waited for four hours which were the longest hours of my life. The nurses came out with the baby. The boy was delivered at 32 weeks, he weighed 2.1 kilogrammes.

"He was taken to the nursery immediately and I kept waiting for the mother to regain consciousness. But seeing my tiny child in the machines feeding through pipes, all I asked from God was to spare him.

"With the encouragement from my mother, I had to be strong since my younger brother was born prematurely at seven months and though very tiny he managed to survive.

"The baby was very weak and at some point developed jaundice and had to be placed on a special light. It was too much but I had to be strong, I would break down when I was at home alone. We were discharged after a month but the first week was tough and we had to play the doctor's role."

Zephaniah Achange, 39

Mr Achange, a cane cutter, is the husband of the woman who recently made headlines by giving birth to quintuplets. He watched his premature babies die one by one.

Their fragile under-developed lungs were unable to fight off the ravages of pneumonia. He had hopes that his wife would give birth to a bouncing baby boy, who would be the fifth born of the family.

"My wife was very active, just as she had been when carrying our second born, a boy.

"She was normal during her pregnancy and worked normally but, unfortunately, we did not know that she was carrying five babies.

"Since the nurses were on strike, she did not attend all the antenatal clinics and was not aware that she was carrying more than one child.

"On the eventful day, she woke up normally and did not expect to go on labour since she was just seven months pregnant, two months shy of her due date. She did her house chores and felt like she wanted to go for a long call but it was labour.

We rushed her to the hospital. Upon arrival, she never stayed for long before delivering her first child and eventually gave birth to the five.

The children were weighing 1.5 kilogrammes, they were delivered prematurely at 33 weeks. They all died three days after their birth. Two, a boy and a girl, died immediately after birth while three, two boys and a girl, died at the Kisii Teaching and Referral Hospital.

The three weighed 1.5, 1.3 and 1.1 kilogrammes at birth and were placed in the incubator. The babies died of a suspected combination of pneumonia, low birth weight and disseminated intravascular coagulopathy which leads to the formation of blood clots throughout the body precipitated the deaths of the infants.

When I heard that she had given birth to five babies, I was very happy since I knew we were going to stop giving birth but now that they all died, there is nothing we can do. God has a reason."

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