Juván’s miracle mission: Wilderness baby home, but not out of the woods

Update

GEORGE NEWS - He looks like a six-month-old baby, but little Juván Havenga from Wilderness is a 17-month-old fighter.

This brave boy has already endured more than most people do in a lifetime. Although he has finally been discharged from Panorama Hospital in Cape Town, his journey to recovery is far from over.

Juván spent more than a year in hospital, where the doctors fought to stabilise him after severe health complications left him dependent on machines, intravenous feeding and specialised care.

He was diagnosed with autoimmune enteropathy (AIE), a rare and life-threatening condition that prevents his body from absorbing food, and he relied on total parenteral nutrition (TPN), delivered through a Broviac line directly into his heart.

Earlier this year, complications led to kidney failure, sepsis, metabolic acidosis and cardiac arrest. He was resuscitated and spent 16 days on a ventilator. Against all odds, he survived with no brain damage.

Since then, he has undergone intensive rehabilitation and therapy. While his life was saved, his development has been delayed, leaving him the size and with the abilities of a six-month-old baby.

His mother’s greatest wish is that he will at least be able to crawl, and hopefully even walk, by the time he turns two.

To give him the best chance at progress, Juván urgently needs the help of therapists. His family is appealing for a music therapist, play therapist and speech therapist to provide therapy at their home in Wilderness. This will give him the safest and most comfortable environment to work on his recovery.

“Juván is on a long road of rehabilitation, and this support will make an incredible difference in his development and quality of life,” his mother, Adelizé, explains.

“Any referrals, advice or assistance would mean the world to us. Thank you to everyone who continues to walk this road with us.”

Ettienne, Andelizé, Alienké and baby Juván at thome in Wilderness.

Home sweet home

Being home after such a long stay in the hospital has been both strange and wonderful for the family.

Adelizé says it still feels unreal to be back. Her husband, Ettienne, and their older daughter, Alienké, drove to Cape Town every weekend to visit her and Juván.

“It was very hard on us as a family,” she says.

“But Ettienne did such a great job at home with Alienké. He even potty-trained her and helped her reach several milestones while I was in hospital with her little brother. I’m still getting used to being back home, but I’m elated that we can finally be together again as a family.”

At the moment, Juván still depends on his specialised Neocate high-protein formula, which he receives through his Mic-Key button with the help of a Nutricia Flocare Infinity pump.

The Mic-Key button is a small feeding tube inserted directly into his stomach, allowing both his formula and medication to be safely administered.

His mother carries the pump with her in a bag at all times, as it is a permanent part of their daily routine. His parents are slowly introducing small amounts of puréed foods such as banana, apple, baby marrow and sweet potato - he doesn’t tolerate pumpkin. The doctors stopped his TPN on 25 August, but it remains in place for emergencies.

“At this stage, it’s very much trial and error. We try different foods and see what works for Juván’s diet and what doesn’t. He loves bananas. We stopped the TPN and will see how he goes without it. We can start it in case of an emergency or if he doesn’t manage without it. For now, he seems to be doing fine.”

His Brovaic line, however, will be kept in for six months. A Broviac line is a type of central venous catheter that is inserted into a large vein, usually in the chest, for long-term intravenous (IV) access.

In addition to receiving medication six times a day, Juván also requires several brain medications, including Epleptin, as part of his treatment. His parents remain hopeful that, in time, both the Mic-Key button and TPN will no longer be needed at all.

To assist the family with medical costs towards Juván's recovery, readers can visit their BackaBuddy page.

Big sister Alienké lends a helping hand with her brother’s medication under the watchful eye of their mother.

Morning medication for Juván.

Editorial comment

When this journalist visited the Havenga family last week, Adelizé was feeding Juván mashed carrots. He ate, but not without protest. This little boy is strong-willed and knows exactly what he wants.

Watching him, it struck me what a miracle it is to see him alive after everything he has endured. I have the utmost respect for his parents.

We don’t realise what we are capable of until we are pushed to limits we thought impossible. The Havenga family’s day-to-day routine is anything but ordinary, but they have adapted to their ‘new normal’ with courage and grace.

It is truly inspiring to witness.

Andelizé is happy to be home with her son. Photo: Kristy Kolberg