TEF & EA Baby on the mend SCARY SHOOT
Little Marique Kloppers (17 months) from Glenvista, Johannesburg, was born unable to swallow or breathe with ease. Just before Marique went in for a lifechanging operation, we spoke to her parents, Anré and Andre.
“My pregnancy was smooth all the way up until 29 weeks,” says Anré Kloppers. Then the doctor discovered that Marique couldn’t swallow while in the womb. The fluid was building up in Anré’s body because of this to the extent that, at the 32-week mark, it looked as if Anré was expecting twins.
“The pregnancy was becoming unbearable, and I was in pain 24/7. Only lying in the bathwater provided any relief.”
In the wee hours of a June morning, Anré’s water broke.
It was bitterly cold and raining when they went in to hospital.
“After a frustrating time of Covid questions, I overheard the nursing staff saying ‘no heartbeat, no heartbeat,’” she remembers. “The doctor arrived and confirmed that they were struggling to find a heartbeat and that my baby was in distress. I was in such pain that all I was thinking about was to get her out.”
THE DIAGNOSIS
The c-section was performed just before 5am. Marique did not cry. She weighed in at 2kg.
“I remember seeing her blue eyes, and then they rushed her to the ICU,” Anré says. “I didn’t touch her or get to hold her.” X-rays and more tests confirmed the diagnosis. “Tracheoesophageal fistula and esophageal atresia became everyday words in our vocabulary. In short, she is a ‘TEF baby’ and an ‘EA baby’. What that means, in simplified terms, is that her oesophagus and trachea are abnormally connected, causing fluids to get into the airways and interfere with breathing.”
“After the c-section, I felt numb. The mom next to me in the ward had her baby, and I didn’t have mine.
“I had been told they were going to operate on her a couple of days later. In order to not have milk go into her lungs, they needed to repair her oesophagus.
“If I focused on my baby in ICU, I would lose the plot. Looking back, I realise I needed a psychologist to help me. I would have loved more support.”
RECOVERY
Baby Marique recovered in the ICU for another eight weeks. She was fed through her nose with milk that Anré expressed. “The rules were one visit per day, one visitor per day. Not being able to hold my daughter, and seeing her with wires and tubes everywhere made the numb feeling continue.”
Once home, Anré and Andre thought that the worst was over. However, Marique cried a lot, didn’t sleep well, and two doctor’s visits later, it still sounded as if she had bronchitis and was gasping for air. She also had bad reflux.
To try and get some normalcy in their lives, they planned a newborn photo shoot with Charlene Louw. During the shoot, Marique needed some milk. She wasn’t sucking, however.
“Her mouth went blue, and she stopped breathing. I had learnt CPR, but it flew out the window! Charlene took over.
“She blew in Marique’s mouth and did CPR. Although I called the ambulance during the commotion, there’s no doubt whatsoever that Charlene saved my baby’s life that day.”
After medical assessment, it was back to the ICU with pipes, tubes and feeding through the nose.
The general consensus was that this little girl was not going to make it. The only option was to make a hole in her throat, as this would keep the airway open for her to breathe. Feeding was done via a gastrostomy tube.
Anré had to be hands-on from here on out. She went for training on how to change the tracheostomy tube after the operation.
“It felt abnormal,” Anré says, “but the nurses really helped me.”
The scariest part was having to go home to do it all by herself with no assistance, but she knew the day was coming. Thankfully, Andre also learnt how to do it, so he could help.
This time a psychologist was recommended to Anré, and she took up the offer.
PLANNED OPERATION
During the next operation, a so-called posterior tracheopexy procedure will be performed, during which the back of the airway gets attached to the spine so that the airway cannot close again.
When they heard this was the next step, Marique’s parents were concerned. “We were so worried, as we were told we would have to take her all the way to the Boston Children’s Hospital in the United States,” Anré says. “‘How on earth would we afford this?’ we thought. But it never crossed our minds that we wouldn’t do it – it is our child’s life! – so we promised to do the absolute best for her.”
The finance needs were real though, as Anré had resigned from her job as a teacher to take care of her daughter full time. Through Facebook, she connected with other parents who had travelled a similar journey with their children. They also found out that the operation could be done in Cape Town. There was much rejoicing.
ON THEIR WAY
Things began to fall into place.
Anré recounts all the generous offers they have received to make the operation possible.
Someone paid for their flights.
A friend has offered a car and a place to stay in Cape Town while Marique is in hospital.
When they finally return home, Marique will be without her trach tube! Andre and Anré – and Marique – are looking forward to that device finally being gone. ●