Our baby emma has four holes in his heart

Baby Emma Kakungulu, six months old, was born with no complication. In fact, he was a really peaceful baby. Trouble began when he was three months old. He could not stop crying and doctors did not know what was wrong with him.

It was later discovered that he has four holes in his heart, and a blocked valve. Diane Basemera brings you his heart rending story

At the Mulago Heart Institute, I squeezed through masses of people queuing to see cardiologists, some probably waiting on their patients, before I could get to the critical care unit. Finding Emma’s room was no hustle as the nurses were friendly and welcoming.

On entering the room, my eyes first met with a grey-haired man with tubes plastered to his nose, mouth and any other little space the medics could use up on his face. It was the same case for the man on the right who seemed a bit younger only with a swollen face.

I strode fast, anxious to meet Emma, who was at the extreme end of the room.

Opening the curtain to his cubicle, I was first greeted by the oxygen mask clinging to his face. Before I said anything, his mother moved quickly to adjust the mask.

“Do you always have to sit there holding that mask?” I asked her. She explained that every now and then the baby displaces it with his movement, so she has to keep an eye on him.

Emma is wrapped in blankets and sheets as the room is cold from the air conditioner.

By looking at him, I can feel his discomfort. My heart dampens with sadness. Emma was whizzing. His skin was of a rare shade as it was slowly turning back to his normal colour from blue. He had suffered a heart attack just before I arrived. The monitor in his room was reading 50 flickering red at the blue curve, which meant danger.

The blue curve stands for the oxygen intake. Panic shot through my body, I didn’t trust my limbs, so I asked for a chair, wondering how the parents managed to keep calm.

Sometimes the blue curve figure fluctuates too low especially when the baby is distressed, hungry or without energy as he fights for his life.

The parents, David and Prisscah Kakungulu have a task of ensuring the baby is always calm so that he does not easily give in to another attack. Baby Emma has to always be in a squatting posture so that all the blood does not drop down to his feet leaving none for his heart. The father worries about his son’s legs being in that posture all day and all night.

A typical heart attack

His eyeballs roll back and what is left is white. You see him struggling for breath, while battling with suffocation. His skin or lips turn blue. He clenches his fists and sometimes collapses.

A nurse walks in and injects Emma with an antibiotic. He moans from the pain as he has no energy to cry. My heart bleeds. I wish I could take that pain away. The parents explain that it may take him about six hours to recover from the attack, after which he will get back to being like a normal, healthy baby. The trick here is the unpredictability of the next attack. It could happen in the next one to six hours or even the following day. It could also happen when he is passing stool or urine or even just crying.

While David is still explaining all this, Emma starts to whizz. I glance at the monitor and the oxygen level is down to 29-30 flickering red danger. I panic again. My heart drops to my stomach and I feel my intestines clench in pain. Emma moans again, and I stand up quickly and realise I actually can’t do anything about it but pray. I’m fighting back my ever so betraying tears. For a moment I wonder if I am strong enough for this interview. But I have to hastily collect myself and act professional.

What the mother says

Emma was born on December 25, 2011 through normal delivery. Prisscah’s pregnancy was healthy and normal except at the seventh month, when she was declared anaemic. She treated the anaemia with supplements and eating food that helped increase her blood supply. Soon she was back to normal.

While in labour, at the ninth month, Prisscah had a pounding headache. The baby’s heart beat was low and Emma was declared tired. Her water also broke; discoloured and dirty. Prisscah was set for a caesarean birth but before the doctors could do anything, she miraculously pushed Emma out, fatigued. He vomited a dirty fluid while some of it came out through the nose. 

He was given antibiotics and the next day they were discharged.

Emma’s first and second month passed by without incident. Unlike his older brother Elijah, who gave his parents sleepless nights, Emma was a peaceful baby. It was in the 10th week that Emma began wailing. He was given all sorts of medications, from gripe water to paracetamol, but never was anything diagnosed. Emma cried day and night.

One day, when he developed a fever, Prisscah rushed him to the nearby clinic. While she waited for the doctors to do tests, Emma’s eyes turned white, his muscles went limp and all the little energy he had in him was lost. He collapsed in her arms. 

A good Samaritan, who was also at the clinic had a car and rushed them to Kadic Hospital and he was immediately put on oxygen.

Baby Emma was then admitted. A team of medics tried to save his life. Looking for his veins was a task, lasting about two hours.

Meanwhile he was turning blue and his blood started to clot. Prisscah fought to stay strong for her baby. While she narrates, I get distracted by

Emma’s snoring. I panic and glance at the monitor. To my relief, it has risen to 45. I say a quick silent prayer for Emma.

At Kadic, he was put on drip and the doctors started the endless tests, all of which yielded nothing. Many medicines were tried, one after the other, but there was never a change in Emma’s health.

One lucky day
One lucky day, a team of cardiologists from Apollo Hospitals, India were on a tour around the different hospitals in Uganda.

When they visited Kadic Hospital, they saw baby Emma. Luckily, Kadic has cardio equipment, which unfortunately none of the doctors could operate. One of the paediatric cardiologists checked Emma and found four holes in his heart and a closed valve.

Immediate open heart surgery was recommended and he was quickly referred to the Uganda Heart Institute in Mulago. At the heart institute, the tests were repeated and the diagnosis was the same as at Kadic. 

Emma will forever need to be kept on oxygen until the surgery is done.

Prisscah gets emotional break downs every now and then. She feels Emma’s pain in her  chest whenever he gets a heart attack, a feeling she describes as her heart painfully jumping out of her chest. She is exhausted from sleepless nights of watching over her son and looking at the monitor just in case the oxygen levels fluctuate.

She resigned from her teaching job at a kindergarten to take care of her Emma.

Elijah
The Kakungulu’s two-and-a-halfyear- old first born is also affected by his brother’s state. He misses his brother at home and keeps asking for him. At the hospital, he keeps saying “sorry baby Emma, you will be fine.” He misses his mother and is slowly adjusting to being taken care of by his father.

The father

When Emma first collapsed, David was in church praying. Learning about his state was a big blow and all he could say was: “God have mercy.”

To him, his father being hospitalized in 2009 was not as challenging as Emma’s case. A teacher by profession, he started to imagine the journey of begging for money.

His friends talked about charity and different organisations that could help. But for him, the big question was where to begin. Explaining to people and giving them medical reports is not an easy task, but it is totally worth the sweat.

David is a believer in hard work who had to swallow his pride and go out to the street to hunt for money to help save Emma’s life. He needs $17,000 (sh40,800,000) for the whole project. Money keeps coming in and is used to buy medicine and pay the hospital bills.

Just as I am about to leave, Emma bursts out crying. His parents dash to his bed. Looking at the monitor, his oxygen level has dropped to 20, my heart starts to pound. I feel a pain I cannot explain. And while Emma’s fists clench, I feel like grabbing him to comfort him, but I remember he is not my baby, leave alone all those tubes strapped to his chest. I am helpless. 

I want to scream for the nurses to hurry and help. I run to the door to call for help. Thank God there is a nurse walking in, followed by a team. I am a bit relieved but I cannot help my tears rolling down. It is short lived relief because now the monitor is flickering red at 15. 

I pray, pleading with God; Emma can’t go now, after battling this journey so far. Through my misty eyes, I watch the nurses help Emma. It is then that I realise that I should be strong for the Kakungulus. I quickly recollect myself. 

And such is a typical day with Baby Emma. He was supposed to be operated on not later than May 2012. He is now supported by drugs and God’s grace. 

Any support to baby Emma can be sent to 

Account No. 3620900045 in Centenary Rural Development Bank 

or call 0782455461.