Brienné Ester Krause was born with severe brain malformation and is currently fighting for her life in the NICU. Her parents are now asking for help because their medical fund apparently refuses essential treatment and therapy. (Photo: Provided)
“Only God decides about life and death.”
This is what Adrienne Krause of Tulbagh says about the difficult decision she and her husband, Kobie, had to make after they found out, when she was 27 weeks pregnant, that there were serious complications with their then unborn daughter, Brienné.
At the time, doctors found moisture on Brienné’s brain, after which an MRI scan confirmed further severe brain malformation.
“After many recommendations that suggested otherwise, we decided to continue with the pregnancy, because only God decides about life and death,” says Adrienne.
Brienne was born on 5 April at 41 weeks and “what a miraculous day it was”, says Adrienne.
There was great joy but also great uncertainty when the newborn baby was immediately taken to the neonatal intensive care unit (NICU).
“My mother’s heart was broken that I could not hold my baby like other mothers,” says Adrienne.
She says Brienné was placed on an EEG machine shortly after birth and taken for another MRI four days later. The results confirmed their worst fears.
“There is severe moisture and bleeding on the brain, as well as major brain malformation, including a ‘smooth brain’ and a lack of a cerebral cortex. Brienne’s cerebellum is also very small, which controls movement.”
A “smooth brain” means the brain surface does not develop normally and does not form the usual folds and grooves. The corpus callosum is the part of the brain that connects the two cerebral lobes.
However, despite the challenges, Brienné still fights bravely in the NICU.
Adrienne and Kobie Krause. (Photo: Provided)
“Her first big steps are learning to suck and drink – something she is getting better and better at,” says her mother.
Adrienne says that she deliberately gave birth without any pain medication so that she could walk to the NICU herself immediately after the birth to be with her little girl.
However, the couple say a new battle now awaits, because their medical fund apparently does not want to cover certain essential but very expensive treatment.
According to Adrienne, the fund claims that the pediatrician currently looking after Brienné is not part of its network of doctors, although there is apparently not an available network pediatrician in or near the Cape that the fund covers.
The fund also apparently refuses to pay for life-changing therapy that could help Brienné learn to swallow and feed herself.
“She is still in the NICU, but the fund says the therapy is not necessary,” says Adrienne.
The couple have since started a crowdfunding campaign on the BackaBuddy platform to ask for help with the mounting medical expenses and future specialist treatment.
“Any contribution, no matter how small, helps bring Brienne closer to the care and support she urgently needs,” says Adrienne.
“Brienné is our angel child and we are so grateful that we can be her parents.”