“Our precious girl was born at 29 weeks with a weight of 1.24kg. She had bleeding on her brain, a hole in her heart and had blood transfusions quite a few times like most prem babies. Mihleeya also had Laryngomalacia, for which she underwent surgery on the 15th of April 2021.
Mihleeya was admitted several times due to her allergy to Cow’s milk protein – her tummy started to bleed because of it. She was in hospital for bronchitis, where she then also got Rota. On August the 7th, she was already in the hospital for it – when she had her first seizure. We weren`t happy with response from the Pediatrician at the time, and took her to a new pediatrician the following week. Mihleeya had a sonar of her brain done, and they said that she had “hydrocephalus” – water on the brain.
After a week of waiting for just a referral, we made the decision to have her treated in JHB – by this time the seizures were so severe, she had around 30 a day. In JHB, they did a CT scan that showed the fluid is around the brain, and not inside the ventricles as it was initially shown by the sonar. The service in JHB was fantastic, but unfortunately Mihleeya contracted Covid, and she had to be discharged with medication to stop her seizures – unfortunately she still got seizures, but less.
In the meantime, we moved to Amanzimtoti, KZN, and started with our hopeful referrals and wild history, with a new Pediatrician. She is fantastic. God sent her to us. She immediately started treating Mihleeya and ordered an MRI, repeat video EEG as well as X-Rays and CT scans of her lungs, lots of blood tests as well as urine to test for genetic disorders. And this is where we are now.
Mihleeya’s MRI shows that she has Periventricular Leukomalacia (PVL).
PVL is when the inner part of the brain gets hurt or dies. Mihleeya has “severe white matter damage to the brain.”
The white matter in the brain is the part that sends information between the spinal cord and the nerve endings and from one part of the brain to the other parts in the brain. In short: The brain is like a tree:
The stem (the spinal cord); The branches (white matter); The leaves (gray matter).
Information should be sent from the stem, through the branches, to the leaves to do basic things like sitting, crawling, walking, talking etc. Unfortunately, Mihleeya’s branches were so badly damaged that the Drs are not sure if she will ever be able to speak – she will be able to understand, because her thinking part (gray matter / leaves) is untouched, but she will not be able to articulate it.
Her brain’s white matter is dead in so many parts, that her brain is smaller in her skull. Where it has to press against the skull, there is currently liquid all around due to the white matter that has died. This is why the sonar showed large ventricles (water on the brain), and the CT then showed the fluid around the brain.
PVL is caused by too little oxygen or blood in the brain. With Mihleeya’s birth she was on the Oscillator as well as ventilated, and long on oxygen. It all played a role. So too did the PVL cause seizures – she has around 40 focal seizures per day – it’s the branches that send wrong signals, and then cause the seizures.
There is no treatment for PVL. She is currently on two types of medication, five times a day, which keep the seizures under control.
Our baby needs intensive treatment and therapy. She needs physio, occupational as well as speech therapy. She will also have to learn sign-language. She will have to go for X-Rays again, follow up EEG as well as another MRI to see if her condition is worsening. Blood tests should also be done regularly to test her Epilem levels – too low, and her seizures will continue, too high, and these are toxic to her body. She is currently receiving Epilim, Keppra, Multivitamines, Zinc, Aspelone and Reuteri drops daily.”
Please open your heart to Mihleeya and support our fundraising efforts – all proceeds from the “Angels and Miracles” bracelets are donated towards her ongoing medical care and expenses. Together we CAN make a difference and help a child in need!
Alternatively, please consider a donation; any and all donations welcome. REF: Mihleeya de Vaal.