Two days after baby Rooney was born in 2020, his parents were worried when he could not pass stool in his newly bought diapers.
The excitement about how their bouncing baby boy would bring joy to their home was cut short after the baby started having stomach bloats and constipation.
“I felt like someone was choking my throat. My baby was crying every now and then as if he was constipated,” her mother Molly Awuor, 28, tells the Star.
It was stressful in what was already a tough year after the coronavirus pandemic hit Kenya. Awuor used to sell vegetables and food in stalls, but lost her job. Her husband, 50, used to do construction work that came to a halt with Covid-19.
Hospitals were also under strain from the pandemic. Feeling dejected, Awuor rushed her baby to Athi River Hospital, where the doctors did a check-up.
“At the time, he could not breathe properly. His stomach was swollen and he kept crying, which broke my heart,” she says tearfully.
The doctor said the baby’s colon, which was about 10cm, was rotten and leaking, and they needed to remove it to prevent further infection
Fighting flies hovering around her two-bedroom house in Athi River, Awuor says doctors only gave the baby some medications to soothe him from crying. It did not help.
“After a day, the baby went on with the bloated stomach and crying. I started wondering where the problem was. Why was I paying for something I did not know about?” she asks.
Awuor then decided to take her baby, who was now very weak, to a private facility to get quick help.
“When I arrived, the doctors asked me so many questions and did tests but at the end of it all, they referred me to Kenyatta National Hospital,” she says.
DIAGNOSIS AND SURGERY
Awuor, who had been married for five years, Awuor consulted her husband on the way forward.
“At this point, we rushed him to KNH immediately since his condition was worsening. We took him at night since this was an emergency,” she says.
After various scans on the baby’s stomach, a colon infection was detected.
“The doctor said the baby’s colon, which was about 10cm, was rotten and leaking, and they needed to remove it to prevent further infection,” she says, stammering.
“The leak, they said, was causing the baby to have a swollen stomach and be uncomfortable at all times.”
This rare disease is known as Hirschsprung disease. It prevents bowel movements (stool) from passing through the intestines due to missing nerve cells in the lower colon.
Hirschsprung is caused by a birth defect. Other signs and symptoms in newborns may include swollen belly; vomiting, including vomiting a green or brown substance; constipation or gas, which might make a newborn fussy; and diarrhoea.
When it affects the entire large intestine, it's called long-segment disease. When it affects a shorter length of the colon closer to the rectum, it's called short-segment disease. In this case, baby Rooney was experiencing a short segment disease.
The diagnosis showed he had HD disease. To diagnose it, doctors used a barium enema, in which barium dye is put into the colon.
The barium shows up well on X-rays and helps doctors get a clearer picture of the colon.
In children with Hirschsprung disease, the intestine usually appears too narrow where the nerve cells are missing.
After a few days, Awuor and her husband returned for surgery, costing Sh500,000.
With an NHIF card, the baby was taken in for the surgery, which lasted a few hours, before being admitted to the recovery room.
“I felt a sigh of relief after the surgery because I knew my baby was going to be okay. For the first time since I gave birth, I slept soundly that night, without having any worries," Awuor recalls.
COMPLICATIONS ARISE
Her relief was cut short, however, after the baby developed complications after a month of being discharged.
“The baby could not pass stool again, and it took us back to the drawing board. It's like going back to making decisions without finances to support you,” she says.
"All the money we had, we used it in the first surgery, and nobody told us the baby would need another surgery."
Moreover, given their economic woes, the couple cannot afford to buy stoma bags for connecting to the baby's stomach to collect waste.
A stoma is an opening in the abdomen through which waste passes into either a colostomy or ileostomy bag.
One stoma bag costs Sh600 and a baby poops every now and then. This means more than four bags may be needed in a day.
“Where will I get the money for the bags?” Awuor says.
“I have already used the money in the NHIF card. The baby needs a special food that can ease constipation, what will I do?”
Crying at her house, Awuor asked for help from any good Samaritans to finance the second surgery to correct the nerves in the colon.
“He got worse but when we rushed him to hospital, the doctors said because he was having flu, they could not perform any surgeries,” she says.
“They also said there was not enough oxygen in the facility for the surgery.”
Currently, Awuor is staying at home with her child, not knowing what tomorrow holds.
RECOVERY POSSIBLE
Gertrudes Hospital paediatrician Khares Imran said it is not clear what causes Hirschsprung's disease.
"It sometimes occurs in families and might, in some cases, be associated with a genetic mutation," he told the Star.
"Hirschsprung's disease can be inherited. If you have one child who has the condition, future biological children could be at risk."
Imran says children who have Hirschsprung's disease are prone to a serious intestinal infection called enterocolitis.
Mayo Clinic notes that enterocolitis can be life-threatening and requires immediate treatment.
However, another mother, Joyce Kemboi* (not her real name), 39, said her son recovered after she discovered her child’s stomach was bloated.
"He was only a few days old. I took him to the hospital, where they fitted tubes on him to check what was wrong,” she said.
Doctors said part of his colon did not have nerves, which caused the muscles to contract.
Kemboi said mothers dealing with such conditions must be very clean and hygienic to avoid infections in the stoma area.
“My insurance was over and they could not grant me any major surgery. So I had to wait for the right time,” she said.
Kemboi, who works at a big company in Nairobi, said they looked for money and waited for the new financial year in July when the insurance money would be restored.
“The surgery was a success and the colon area was closed. My baby can now pass stool normally, though he still has the marks in the stomach area due to the stoma bags and the surgery,” she said, smiling.
KNH paediatric surgeon Tim Jumbi said the disease, which affects newborn babies, affects the large intestine.
"A child with this condition is not able to propel stool content out of the anus. This is diagnosed by doing a rectal biopsy," he says.
Speaking to the Star from his home in Karen, Jumbi said doctors take tissue from the rectum area and take it to the lab to check the damage.
"You can also use X-rays to check the damage before it is treated surgically to remove the infected part of the colon,” he said.
When the wound is still open in the stomach, a parent has to buy stoma bags that are a bit costly and not readily available in the market
STAGGERED TREATMENT
Jumbi said surgery must be done in three or four stages, depending on the condition of the baby.
In the first stage, surgery is done to diagnose the disease, then levelling surgery is done. It establishes the length of the diseased colon and the normal one.
"This is done through colostomy, where you temporarily direct stool from anus to pass through the stomach," he said.
The surgeon said the last surgery is definitive. This is where the diseased colon is removed and the normal colon is joined down to the anus area to close the colostomy.
"When the wound is still open in the stomach, a parent has to buy stoma bags that are a bit costly and not readily available in the market," Jumbi said.
After surgery, a gastroenterologist will monitor the child to address chronic constipation and other possible consequences of Hirschsprung's disease.
"Sometimes, children aren’t diagnosed at birth and may later show symptoms of severe constipation and a distended abdomen," he says.
At Kenyatta National Hospital, they record at least 60 cases a year. The disease affects males three to four times more than females.
Edited by T Jalio
