KINROSS – After trying for some time to conceive a baby and considering alternatives, Ms Pascale and Mr Daryll Engelbrecht received the long-awaited news that they were finally expecting a baby.
For most, delivering a baby and bringing them home is a joyous occasion; however, nothing could have prepared the new parents for the life-threatening health complications their baby boy, Rainhardt, is currently facing.
Rainhardt was born at 35 weeks, on 15 April, by emergency c-section due to low amniotic fluid.
The couple learnt after his birth that Rainhardt was born with bilateral multi-cystic dysplastic kidneys.
In his case, both of his kidneys are affected and usually, the fetus does not make it to full term.
Rainhardt is also unable to urinate on his own and currently, the doctors are unsure why.
Because Rainhardt is unable to release his bladder, his parents have to resort to intermittent catheterisation every three hours.
This results in frequent bladder infections, besides the huge discomfort he has to endure from an inguinal hernia as well.
Because of his kidney disease, Rainhardt has to undergo blood tests weekly and is frequently admitted to hospital because of infections.
“During my pregnancy, we knew Rainhardt had an enlarged bladder.
“At the time, doctors could not tell us why, however, I was assured that everything else was fine,” said Ms Engelbrecht.
“When he was born I was not told about his kidneys being under-developed and a doctor only had a brief conversation about cysts. We didn’t fully understand nor get much of an explanation,” said Ms Engelbrecht.
“The doctors said they would transfer him to another hospital, which we thought had something to do with our medical aid not covering all costs,” said Ms Engelbrecht.
She said they only later found out that this was because there was no local specialist available to treat Rainhardt’s condition.
After two days in the private hospital, Rainhardt was admitted to Evander Hospital and then transferred to Steve Biko Hospital.
“I’ll never forget when the doctor came in with her students and said he has dysplastic kidneys. Another doctor said she will write it down and I must Google it and that there is nothing they can do for him,” said an emotional Ms Engelbrecht.
She began to panic and immediately asked about a transplant.
“They told me he is too small and they don’t know how much time he has left. I was shocked. They asked me if I had any more questions but I didn’t know what to ask at that moment, I was so overwhelmed.”
Rainhardt’s only hope is to reach a required weight of 10kg before he is eligible for dialysis and a kidney transplant.
Peritoneal dialysis is used to remove excess fluid, correct electrolyte problems and remove toxins in persons with kidney failure through the abdomen.
“We currently have three family members and an overseas volunteer who is blood type O that we are hoping to be a match for a transplant,” said Mr Engelbrecht.
Baby Rainhardt was released from Steve Biko Hospital just after Mother’s Day.
“We were so happy to finally bring him home,” said Ms Engelbrecht.
Rainhardt’s family did thorough research on his condition by reaching out to professors and doctors from across the world.
“We came in contact with Dr Cecil Levy from the Nelson Mandela Children’s Hospital who confirmed there’s nothing to be done, but he’s is willing to assist and guide us to get Rainhardt to 10kg.”
“The doctor said we won’t be able to tell if his health deteriorates, he will just stop breathing,” said Ms Engelbrecht.
Rainhardt is due for a visit to Dr Levy and his team on 24 June where they will be doing more in-depth tests and looking at why
Rainhardt’s bladder is not working, the hernias and methods of treatment.
Because Rainhardt does not have functioning kidneys he is battling to put on weight. He has only picked up 300 grams since birth.
“Rainhardt will also need a peg which is a feeding tube through the stomach,” said Ms Engelbrecht.
To cut out risks of carting Rainhardt in the winter cold on trips to Nelson Mandela Hospital, the couple is using a local paediatrician, Dr. Adams, to take on Rainhardt’s weekly visits.
Dr Adams in return keeps close communication with Dr Levy until Rainhardt is due for his monthly visits.
The couple also created a Facebook page: Baby Rainhardt’s Kidney Fund, to assist with all the extra medical costs that keep pouring in.
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?fbclid=IwAR04Utm3rWLJEFhClp_7gJ0uZSwQmwUrmApTnknIZqy–ZEvjLjnNtXUvGY
