We were just getting to enjoy our new arrival and Maryke was also getting ready to go back to work after her maternity leave when we took Nikayla for her first check ? up at the Paediatrician. We told her that we were a little concerned that Nikayla was not as active as we thought she should be. The Dr said that we should not be too concerned as all babies develop at their own speed. At the next check up we were still concerned and so we were referred to a physiotherapist who deals with babies. She immediately expressed concern and recommended that we go to a Paediatric Neurologist. We were referred to a Dr in Sandton, but after she started paging through a medical book and saying that it could be a number of things and that she would need to look through the book some more and let us know, I knew we needed a second referral. We were then referred to a Dr Lippert at the UNITAS Hospital in PTA. He had a look at her and immediately told us that he was 100% sure that is was SMA but would like to confirm this with some more tests. We had no idea what SMA was and at that stage thought that all would be well.
Nikayla went for tests that same day; an electromyogram (EMG) which is done by placing small electrodes in muscle, this then creates a graph that indicates the health of the body?s muscles and nerves. The EMG confirmed Dr Lipperts diagnosis, but still we did not understand what this meant. We went back to see Dr Lippert and he gave us the numbing news. SMA (Spinal Muscular Dystrophy) was terminal. He explained a little of what we could expect but our hearts were broken and not much sunk in. He suggested that we confirm his diagnosis with DNA tests. We did this and our fears were confirmed.
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We progressively saw how prone Nikayla was to lung infections and getting all clogged up. We bought a Nebulizer and nebulized her at least twice a day. This seemed to help. In December we went on a family holiday together but it was a struggle with Nikayla. She was constantly all clogged up but we cherished the being together, but always in the back of my mind, I thought we would never have the opportunity to all be together again. This is also when all the anger towards God and all the questions became prevalent. Trying to understand. We had so many people trying to explain to us from their frame of reference, but it is just not the same looking out.
Well Christmas and New Year was emotional while we were thinking whether this would be Nikayla�s first and last Christmas. After New Year's things were better but at the end of January she got a bad lung infection and the Dr insisted that we admit her to hospital. All I can say is that since then it has been a living nightmare. A roller coaster of emotions, sometimes full of hope and other times with no hope. It has been an enormous strain on all relationships including family and friends and of course our marriage. I cannot count how many times we have thought that this was the end. She has now been in ICU for nearly two years. Several times we have thought the worst but the doctors have managed to get her saturation levels up every time.
She now permanently has a feeding tube in her mouth because her muscles are too weak too suck or to feed like a normal child. She is on a special machine called a CPAP that helps her to breathe. She gets very frustrated with all the tubes etc and also with all the prodding of the doctor and physiotherapists and the nurses. She has physiotherapy twice a day, which is very painful and uncomfortable for her. She does have her favourite nurses though and greets everyone by name. She is loved by everyone and is a ray of sunshine in a often gloomy ICU..
Nikayla loves Noddy, Barney, and JJ the Aeroplane. Noddy no longer her favourite but rather "Kareltjie Kameelperd" and other children music DVD's. She also loves it when Dad Sean sings Barney songs to her and when Mom Maryke sings �Hansie Slim.� She has the most beautiful big blue eyes and has gotten nice and plump from the Pediasure that they are feeding her. She's a wonderful little girl and rarely complains even though she is constantly in a tremendous amount of discomfort. A real little trooper that has now started talking past all the tubes etc. in her little mouth. She loves the visits of her sisters every odd weekend and especially when they sing for her.
During her nearly two years in the Intensive Care Unit Mom Maryke has been by Nikayla's side constantly; Sleeping and living in the hospital with her (the first while) and generally being an outstanding mother, while Dad Sean has been working hard in being a support pillar for Mom Maryke and little Nikayla in all the ways possible doing plenty of travelling to be with them.
