Kinross baby continues to fight kidney disease

At first glance, one would never say that baby Rainhardt Engelbrecht (seven months) from Kinross is fighting a life-threatening disease called bilateral multi-cystic dysplastic kidneys.

The Ridge Times reported on baby Rainhardt’s fight for survival in June this year and had the chance to catch up with his mother, Ms Pascale Engelbrecht, on Rainhardt’s latest development.

For a short while, the results seemed positive because Rainhardt was gaining weight after doctors had inserted a feeding peg in August.

He weighed only 3,4kg at the time. The feeding peg is to help Rainhardt consume all his formula and to assist in weight gain.

During this time, Rainhardt was in the Nelson Mandela Children’s Hospital for about a month. Doctors had to make sure he was perfectly stable to undergo the surgery for the feeding peg.

“We had challenges where his potassium levels were too high and would delay the procedure. If it is too high and he goes under anaesthetic, he could have a heart attack,” said Ms Engelbrecht.

It took three weeks before he could get the peg. Baby Rainhardt is fed orally with a bottle.

The formula that he does not finish then gets fed through the peg. Rainhardt has to reach a goal weight of 10kg before he is eligible for dialysis and a kidney transplant.

At six months he reached his halfway goal of 5kg, however, he became ill with high fever, nausea and vomiting and he went down in weight to 4,8kg.

It is still unsure if the fever, nausea and vomiting were due to his kidney failure because these symptoms are common with this type of disease.

“He was hospitalised because of dehydration and the tube of the peg moved,” said Ms Engelbrecht.

After he was released from the hospital and just beginning to gain weight, he was again admitted to Mediclinic Highveld in Trichardt with bronchitis on November 10.

“For a month it was going good. We only saw doctors for a routine check-up.”

Despite his weight struggle, his doctors are happy with Rainhardt’s progress. Where most babies at his age are allowed to start feeding and experimenting on solids, Ms Engelbrecht said they are only allowed to give their son small amounts of solids according to a dietitians advice.

Rainhardt can only consume a very limited amount of foods with low potassium, low sodium and lower phosphorus.

Rainhardt’s diagnosis is rare and it had been hard to find other parents who could relate to this condition.

“While we were in the hospital, there were times we would be impatient, especially when it came to the insertion of the peg. But Dr Cecil Levy explained to us that this is his first patient with this kind of disease and it is a learning process for them as well.”

Even crying too much can contribute to Rainhardt’s weight loss.

“Crying does not help. What makes him a challenge compared to other babies is that if he cries he loses weight which he cannot afford to lose.

“We can’t sleep train him or let him cry stuff out because we can’t afford for him to lose any more weight,” said Ms Engelbrecht.

On the bright side, Rainhardt has been developing just like any other baby would at his age.

“He is babbling, laughing, grabbing on toys and close to the stage where he wants to sit.

“He is also focusing on things like our dog’s movements and on the TV. He loves people and loves the attention he gets,” said Ms Engelbrecht.

Rainhardt will again undergo surgery early next year to have his feeding peg replaced with a Mic-Key tube.

Although Rainhardt is on medical aid, not all medical expenses have been covered, mainly his blood works and some of his medication.

Because there is a waiting period, the medical aid he is currently on will only cover kidney-related issues next year. Donations that have been received, has helped a lot with the unexpected medical bills.

Funding has gone towards unexpected hospital stays which his medical aid did not cover. Just for a night’s stay cost them R15 000.

You can support his cause through BackaBuddy: https://www.backabuddy.co.za/champion/project/rainhardt-engelbrecht. Or through Paypal: https://www.paypal.com/paypalme/babyrainhardt? You can also visit his Facebook page: Baby Rainhardt’s Kidney Fund, to assist with all the extra medical costs that keep pouring in or to keep updated on his latest development.

Ms Engelbrecht thanked everyone who has made contributions towards Rainhardt’s funds, messages of support, care and prayers.

She especially thanked Dr Levy from Nelson Mandela Children’s Hospital and Dr Adams at Mediclinic Highveld for the medical assistance and guidance.