Most of the time, doctors are the ones with answers. But when this baby fell ill, answers were hard to come by.
Doctors assured Emma Bayly that her newborn was perfectly healthy. Instinct, however, told her that something was wrong with her child. Luckily, she acted upon that instinct. Had she not, there’s no knowing where her daughter might be today.
Just not right
Abigail was born full term at 3.1kg and, apart from some jaundice, was perfectly healthy at the time. Seven weeks into her little life she started vomiting excessively, and was soon losing more fluid than she was taking in.“We thought nothing of it she just kept vomiting...”
Numerous trips to the emergency room saw Abigail diagnosed with infant reflux time and again. But regular reflux medication wasn’t helping and Emma knew that something wasn’t right. At first, tried treating Abigail with prescribed medication and different feeding techniques.
“But she just kept vomiting,” shrugs Emma. “At four months she was at her birth weight again.”
Stuck in a vicious circle
Abigail soon became limp, frail and severely dehydrated. At eight weeks she developed breathing problems and, even then, no diagnosis was made. She was admitted to hospital several times undergoing a variety of diagnostic tests including sonars, blood tests, a gastroscopy and a bile biopsy, among others.
“They just tried everything,” says Emma. “We all spent that time running around like chickens with their heads cut off trying to gure out what was going on.” And the tests revealed nothing.
Doctors referred Emma and her family to a gastroenterologist who diagnosed Abigail with reflux – yet again – and sent her home. Within a month, they were back. Abby had developed bronchiolitis.
“She was discharged on Friday and back the very next Monday,” recalls Emma. “That time, the diagnosis was ‘lactose intolerance’.” But after changing to a lactose-free formula, Abigail continued
to vomit and Emma decided to take action. “She was not eating at all and we were not getting anywhere,” she says.
At that point, Emma’s daughter had been in and out of hospital six times. Abigail had, in fact, spent more time in hospital than she had spent at home. Doctors had given up, convinced that Emma was just being hysterical.
“I ended up taking her to the emergency room so many times because it was the only way I could get them to listen,” says Emma. “And that’s when we decided to change hospitals.”
When they did, Abigail was admitted immediately. Finally, after six months of painful and traumatic diagnostic tests that failed to yield any sort of results, Abigail’s new doctor diagnosed her with
gastroesophageal reflux disease, also known as GERD.
A bit worse for wear
A condition far worse than simple infant reflux, GERD is a chronic disease in which the acidic contents of the stomach push up and out of a child’s oesophagus.
There are multiple causes of the disease, but in Abigail’s case her persistent vomiting was as a result of a weak lower oesophageal sphincter, which is the valve between her stomach and her throat. Abigail’s bowel had become damaged and swollen, and she had developed oesophagitis (inflammation of the thoat) because of the aggravated reflux she was experiencing.
She also suffered from bronchiolitis, a direct result of GERD, due to the acid from her stomach making its way into her windpipe. “Her lungs were starting to shrink,” says Emma. “They had gotten
Abigail’s throat and lungs were also burnt and raw. Eating was painful. She was refusing food and losing important nutrients. A dietician was brought in to assess the situation, and Abigail was put onto protein and carbohydrate supplements through a naso-gastric feeding tube.
Still Abigail couldn’t keep the supplement down. “Eventually, only stomach acid and bile were coming out,” says Emma. “There was just nothing in her body to vomit out anymore.”
Big decisions to make
Even with a diagnosis and the appropriate medication, Abigail was not getting better. Most babies outgrow GERD and regular acid reflux, but with the more severe cases, like Abigail’s, waiting is just
too risky. Recognising the severity of this baby’s condition, Abigail’s new doctor urged Emma to consider surgery.
“It was becoming life-threatening,” says Emma. “Her vitamin levels were incredibly low.” Due to the lack of protein, Abigail’s kidneys and liver stopped functioning properly. “She became so frail and
unhappy,” says Emma. “So we decided we weren’t going to wait anymore.”
Despite the intense fear of what could go wrong during surgery, and having to raise money to cover a hefty co-payment, Emma decided to go ahead with the procedure.
The start of the end
Abigail underwent a laparoscopic nissen fundoplication. During this procedure, the surgeon wraps the upper sphincter (that connects the oesophagus to the stomach) around the oesophagus itself, making it impossible for food to be pushed up and out.As a result, Abigail would never be able to throw up again.
When the day of the surgery arrived, Emma was tortured with conflicting emotions. “I was happy, but at the same time I was very, very scared. ” Abigail was in theatre for two and a half hours, which felt like an eternity for Emma and her family.
“There were a few moments when I thought I was going to lose her,” she says, her eyes welling up.
“Every time the door opened and it was for another family... It was just so scary. It had all been a long and emotional ride for all of us.”
What comes after
The surgery was a success, and by the very next day, Abigail was already on the road to recovery. She was sitting up in her bed, playing, and slowly but surely becoming the lively little girl that she was always meant to be.
“The GERD changed her a lot,” says Emma. “She became very tired and reserved and was very attached to me. She didn’t smile much or laugh at all. Even though she was just a newborn at the time, I could just tell that this wasn’t her.”
Having just celebrated her first birthday, Abigail is now definitely a people person, according to her mom. “She just puts a smile on everyone’s face. She’s loud and loves Mickey Mouse.”
There were some inevitable complications as a result of the surgery such as gas bloat, the inability to vomit again, and having to learn to eat from the beginning – but Emma and her family are convinced that they made the right decision.
“We just decided to deal with the consequences of the surgery rather than play with losing her,” she says. “Her organs were failing and it was life or death. If we had left it, I don’t think she would be here with us today. I can’t help but think, if I hadn’t believed in myself, where would she be now?”