Biopsies show new disease in Chadé (6)
Although it is still a terminal disease, she will be able to live a more comfortable lifestyle following multiple surgeries
AFTER numerous tests and biopsies, six-year-old Chadé van Niekerk has been diagnosed with Hirschsprung disease.
This condition is connected to the Hollow Visceral Myopathy (HVM) with which she was diagnosed in May last year. Hirschsprung is a disease of the large intestine (colon) and causes severe constipation or intestinal obstruction.
Her mother, Charlotte Diedericks, told EXPRESS on Wednesday that although it is still a terminal disease, she will be able to live a more comfortable lifestyle following multiple surgeries.
Chadé was admitted to the Redcross Children’s Hospital on April 23 in a critical condition.
“At this stage doctors are doing everything possible to figure out what they can do for my daughter to make her life easier and the pain less,” explained Diedericks. There is also talk about removing the tube through which she is tube fed from her nose and replacing it with a type of valve that goes directly into her stomach.
”She will then have two holes in her stomach, one for the ileostomy bag and the other for tube feeding.”
Diedericks added that Chadé would have to stay in Cape Town for another six to seven weeks due to all the tests being done and they would have to consider moving there permanently.
Chadé was supposed to be admitted on Monday but doctors postponed this to wait for all her test results to come back. She will now be admitted in two weeks time, for further biopsies, to see how much her colon has been damaged.
Also read:
• Fighting Chadé get to go ‘home’
• Chadé’s family receives heartbreaking news
• Critically ill Chadé (6) admitted to Red Cross hospital
“Doctors also said they might have to remove her entire colon if it is too damaged and then she will be on tube feeding for the rest of her life and use the ileostomy bag permanently,” Diedericks added.
On Monday, doctors tried to do a neuro dynamic test, which is performed through a catheter, to pinpoint how far the disease has spread.
“After twice trying to give her anaesthetic they could still not win. Chadé was hysterical and didn’t want to do anything the doctor’s asked, so they decided to postpone the test to May 26.”
Other tests done this week included a kontra swallow test to see if the HD has further affected Chadé’s oesophagus. The little girl is now able to swallow fluids and a food test will be done at a later stage to see how far down her food can go when she swallows.
“It’s a long process but we are keeping hope and praying for a miracle. We have seen some very positive signs, especially Chadé’s weight gain from 11.2kg to 18.3kg, all thanks to the tube feeding.”
Chadé was invited to the KFM studio to meet presenter Ryan O’Connor for an interview on May 12 after he had organised accommodation for the family at the Century City Hotel, together with Old Mutual. They also enjoyed a sponsored photo shoot with Bianca Smit Photography on May 14.
“We are so grateful for everyone’s support, prayers and donations. Chadé enjoyed the radio interview and the photo shoot so much,” said Diedericks.
”It was very cold on Bloubergstrand but we had a lot of fun building sand castles and playing in the water with our feet. It makes me very happy to see my child happy and enjoying herself.”
Anyone who would like to make a donation towards food and petrol for the family can contact Charlotte on 076 969 1864 or Fransien on 076 120 2241.
