The Story of Charlottka

The neonatology prognosis was that she would be deaf, blind, would eat through a PEG (a tube inserted into the stomach), have her salivary glands injected with Botox, would require lifelong tracheostomy, and be connected to a mechanical ventilator. We left the neonatology unit when she was 1.5 months old with mechanical ventilation, oxygen, a saturation monitor, a suction machine, and a lot of medical consumables, plus I was trained in changing the tracheostomy, resuscitation, and all the care that the little one required. 

Charlottka can see (she currently wears distance glasses) and will have one hearing aid for her right ear. Occasionally she will sit up for a short while (about a minute) or, with assistance, she can stand if she wants to.  Since the age of 9 months, she eats everything by mouth, is weaned off the mechanical ventilator, and is managing her own breathing. This means we also avoided the need for a PEG insertion and salivary gland injections.  We plan to have the tracheostomy removed. 

Current prognoses suggest that she should be walking and talking, and thus will be without a tracheostomy. We have high hopes for gene therapy (medication) based on genetic treatment, which scientists in the USA have been working on for over 6 years at UTSPH SA.

Thanks to rehabilitation at the rehabilitation centre in Propriose (Bratislava), rehabilitation activities at NÚDCH, and various rehabilitation aids, Charlottka is slowly making progress.