East baby battles rare kidney disease
Both her kidneys have been removed, and she is receiving dialysis treatment to replace the function of her kidneys.
A nine-month-old baby from the east in Pretoria is battling a rare kidney disease. Little Leanke Micaela Jansen was born on 11 June 2020 at 31 weeks.
At seven weeks premature, she was diagnosed with Autosomal recessive polycystic kidney disease (ARPKD) which is a rare genetic disorder that affects 1 in 20 000 children.
A foetus or baby with ARPKD has fluid-filled kidney cysts that may make the kidneys too big or enlarged. ARPKD can cause a child to have poor kidney function, even in the womb.
Since her birth, both her kidneys had to be removed. At the moment she is receiving dialysis to replace her kidney function.
According to her father Bernard Jansen, they are waiting until Leanke reaches a weight of 6kg to be placed on the kidney donation list and when she reaches 8kg, the doctors will be able to do the transplant.
“We don’t know yet if any of us are a match to Leanke,” Bernard told Rekord.
“There is a bunch of blood and tissue tests that need to be conducted before the transplant can happen. We can only start testing for compatibility once she reaches 6kg.”
Leanke’s health challenges started when she was still an unborn baby in the womb.
“My wife’s amniotic fluid started decreasing and the doctor really tried his best to wait until the very latest to take her out. She was born via caesarean and her difficulties were first noticed when she had trouble breathing.”
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Bernard said that although the dialysis Leanke was receiving is helping with her kidney function, the effects of the oxygen has other adverse effects on her small body.
“We, unfortunately, learned yesterday that she might have some sight problems due to the oxygen she’s getting. Her treatment, like many others, treats one part of the body but destroys something else.
“The tests on her eyes indicated that the nerves in her eyes look a bit pale, this indicates that she definitely has some sort of vision impairment. The doctor can’t say with certainty if she is blind but there are definitely some problems. She needs to be tested again in six months and then he might be able to give more clarity.”
Leanke has been in hospital since the end of November 2020 and she will soon be released from the hospital to be cared for by her parents at home.
“We are looking forward to having her home with us and her big sister, her grandmother will be taking care of her here during the day, but we aim to raise some funds as the medical aid will not be able to cover her out-of-hospital care,” said Bernard.
Leanke will be receiving daily dialysis and will still be on an oxygen machine for the foreseeable future until she can get her kidney transplant.
If you would like to assist the family in their fight for a healthy kidney for their little girl, feel free to contribute towards their Caring Daisies fundraiser or contact Bernard directly at bernard7jansen@gmail.com.
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