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She is Flourishing – #RareMum Tina Joubert’s story with CVID

Our beautiful little girl was born 20 Sep 2013, for the first 4 days while in hospital all went well and then nothing was ever the same or “normal”…

Upon our arrival at home it was chaos, she started screaming and we had little to no sleep over the course of the next 3 months, we were shocked, tired (very tired) and we went back to 2 different paediatricians, just to hear the word “colic” and ultimately that you don’t get colic babies, but colic parents. We felt like the worst parents ever! Utterly desperate we reached out via email to Professor Pieter Fourie, each sentence I typed seemed like a cliché but now that we know him, he firmly believed babies don’t cry for no reason if they are loved and fed.

We ended up in hospital on several occasions for series of tests and, finally, after 2 barium tests (which in itself tested my #nervoussystem to the maximum) she was diagnosed with a #gastricvolvulus. We were elated and devastated at the same time, it was close to Christmas 2013. We went home Christmas eve with her having surgery and a #gastrostomy feeding tube inserted. Again, our world as we knew it, were shattered, I had a very hard time to make ‘friends’ with this foreign object that made it’s way into my perfect little girl’s body. During this time we were supported by a NPO, Daniel and Friends Fund, the founder, Lianie le Roux came to assist with cleaning of the wound, which gave me sleepless nights. No tummy time, no ‘proper’ hugging – my idea of having a baby was slowly falling to pieces…

When the screaming started we suspected a lactose intolerance and switched her feeding to Rice Milk – which then led to her getting #Anemic and we were hospitalised once again.

Shortly after she recovered I started to notice her being very much lethargic and her breathing became laboured and short – in a matter of day I grew so concerned, we were admitted again, she was diagnosed with #Pneumocystispneumonia (PCP) and this time it was serious, we were immediately admitted to ICU. The little bit of hope I had shattered again into little pieces and was lying on a hospital bed at 4 months old.

She was very very sick but she has an amazing fighting spirit and we made it back to the normal ward after about 5 days. They had to figure out why she contracted PCP (usually found in HIV positive and cancer patients) and then was diagnosed with an Immune disorder – several different variations until we settled on Common Variable Immune Deficiency. Since her diagnosis, we had a Port surgery – which seemed futile because the Medical Aid would cover the cost of the surgery but not the medicine (Polygam) that would be administered through it – we had it removed after a year.

With the insertion of the Port her stomach tube was removed because by this time her stomach had settled and she was feeding successfully. I could hug my child! During all of this, until now she’s been on chronic antibiotics and supplements and during 2016 she had 4- weekly Polygam sessions. Any mom/carer knows that stopping infront of the hospital is the last you want to do but you have to. How many times have we had to pin her down for blood samples, drips and you look into their eyes and feel like the biggest traitor in the world.

She turned 4 in September 2017 and our road is still uncertain – will she outgrow the CVID – will she ever know a day without constant medication? She was cared for at home until 3 years old and successfully attending full day school now so we’ve had little victories and despite her low immunity she is flourishing.

People always look at her, and my story (now) seems unbelievable – they see a healthy, active, beautiful little girl but little do they know the constant care and worry that goes into her daily routine. So, for all the ‘silent’ patients that have a constant battle on the inside, you have my admiration and empathy. Good luck to you all!

Thank you for all you do for the patients, giving us as carers the courage to go on another day.

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