My name is Martha Maria Tsiforos. I am a single mother of two children and I reside in Parkhill, Durban North. Being a single parent has not been an easy task, but, the day I found out that little Nikkita had Marfan's Syndrome, my life became a nightmare. She was a year and 3 months when I found out. The issue is not the syndrome, the issue is how uneducated the Durban doctors are to the syndrome. Little Nikki has been poked and probed and used as a guinea pig from a very young age. She is known as a classic case as her heart, eyes and skeletal structure have been affected. Unfortunately, her father has her on "Resolution Health" medical aid, which obviously does not cover her needs.
After a few years of doctors poking and probing little Nikki, I decided that it was affecting her psychologically and that I would only take her to the doctors when necessary. I also did not have the finances and time to sit in queues at the government hospitals. Unfortunately, Nikki hit puberty last year and all her health issues deteriorated.
Due to my stress of the last few months, I have now gone and misplaced her appointment card, but I will try my best through other means to give you the dates of the appointments.
In October 2014, I took Nikki to Dr Bayat in Addington Hospital - He is a cardiologist and a very good one at that.
He referred Nikki to the Ophthalmologist in Addington - Dr Reddy, Nikki went for two appointments namely 02/12 and 12/12. She was then referred for follow-up at Albert Luthuli Hospital in January 2015. She was then referred to the Optometrist in Feb 2015 and she also had an appointment with the Cardiologist at Albert Luthuli on 25/02.
On the 24th of March, Nikki had to go for her pre-op. The ophthalmologist said that Nikki's lenses had dislocated and that they would remove the lens in the one eye. They would not put a synthetic lens in as they wanted to see if they could correct her vision with glasses or contact lenses. They were also afraid that she might react to the synthetic lens and the shape of her eye was not round but oval, and that also worried them that the lens might tear. They did say that if they could not correct her vision they would then have to re-operate and put in a synthetic lens. We were to do one eye and that would give us an idea on what has to be done with the other eye.
Nikki was admitted on the 21st of April to be operated on the 22nd of April. An hour before her scheduled op, the operation was cancelled. We were asked to go down to the eye clinic and see Dr Venter (the professor and head of ophthalmology). Dr Venter told us that the operating doctor had to cancel because he did not know how to do the operation from behind the eye, and in Nikki's case they had to remove the lens from the back. Then Dr Venter checked Nikki's eyes and blatantly said "I don't see why you want to do the op. The child is not blind yet". That comment was enough to spin me. I told her that Nikki is in school and is struggling to see the board and to do her work. I told her that if we wait for the child to go blind that she would miss out on school. Dr Chetty, who was also present, understood my case and said that he would do the op for Nikki but only in April. Funny enough, another ladies op was cancelled on that day because they ran out of lenses. The lady was screaming and performing saying that that was the third time that her op was cancelled and that she would not come back.
We had an appointment at the clinic in April, but no pre-op was done. We were told that she needs to be admitted in the afternoon of the 21st of April and the op would take place on the 22nd. I asked them to please put Nikki as the first op as her heart takes the strain if she does not eat for long periods. I also asked them to please tell the nurses in the ward that Nikki is a "special" case, and if necessary I would like to spend the night with her.
Nikki was admitted and the anesthetist, a very sweet lady, came to check on Nikki and to ask a few questions. I did ask her to please give Nikki gas before the anesthetic because she is terrified of needles.
The big day came, but they only wheeled Nikki into theatre after 12 pm. The anesthetist was present and they allowed me to be with Nikki until the gas was administered before the anesthetic. I then went to wait in the waiting area of the theatre. Forty minutes later, the theatre nurse came to see me and called me aside to tell me that when they administered the anesthetic Nikki's heart started racing and she went into cardiac arrest. She said that Nikki is fine now, but the cardiologists from the next door theatre had to come and help and they had to shock her to bring her back. Every mother's nightmare!!! They said it was a simple procedure and that the anesthetists know what they are doing.
Anyway, I went back to the ward with my daughter after they stabilized her in the recovery room. They tried to get her a bed in ICU, but there were no beds available.
I went home quickly because I had to feed animals etc. and was planning to stay next to my child’s bedside during the night. I got back to the hospital during visiting hours. To my dismay, the night staff would not allow me to stay, I was torn. I nearly lost my child that day and these people showed no empathy. They said to me that she was not a minor. When I was leaving, it sounded like the staff were in a fish market. They were laughing and shouting and I remember thinking to myself that should anyone call out for them they won't hear anything.
I came home in tears and phoned my daughter on her cell phone. She was wheezing and could hardly breathe. I immediately phoned the ward and spoke to the nurse that answered and I told her that they need to phone the cardiologist because they cannot just give Nikki any medication because of her heart. The nurse said that the cardiologist was not at work. I lost it!!!! I started screaming at her and told her to get hold of a doctor on call and find out what they can administer to Nikki cos she just had a cardiac arrest. She blatantly and ever so calmly told me not to tell her what to do. I got even MORE upset!! I then told her that if something is not done soon I will get in my car and come and take my child out of there. I then put the phone down and phone the switchboard and asked to speak to the manager of the matron in charge. She was in a meeting and I told them it was urgent and that I was worried for my child's life. I then spoke to a lady and explained what happened and she said she would phone me back. I waited a bit and phoned Nikki again and she was in tears. When I asked her what happened she said that the nurse told her that I am very rude. And then she said to me "Mommy, why did you have to make so much noise?" I told her to let me be a mother and she must just get better. She confirmed that they had nebulized her and that she felt a bit better. The matron/manager phoned me back to confirm that they had nebulized her and that they would keep an eye on her.
I phoned early in the morning to find out from the nursing staff if Nikki was okay and to inform them that I would go in early to be with her. I was told that if I come early they would not allow me to sit with her. I then told them that she was to be discharged and they said that they will phone me to come once she is discharged. I phoned Nikki and told her that if she needed anything she must phone me. I went early to the hospital and waited in the car park. Nikki phoned me and told me that she had been discharged.
I went to the eye clinic to see the manager there as I wanted to set up an appointment with the matron for that ward as I was not very happy with everything that had happened. As I was speaking to the manager, Dr Chetty (the operating doctor) came out his office and saw me and came up to me and profusely apologized for what had happened. I felt very sad for him cos he looked as if he himself would start crying. When I started explaining to them both my dilemma since the incident, I started crying and he took it in his own hands to arrange a meeting for me with Matron Green.
I went up to the ward and Nikki was waiting for her meds. (The poor child now has to take four different tablets for her heart and she has deteriorated since she first went there. She gets dizzy spells, loss of breath and is very sleepy).
Matron Green eventually came and she had already heard about what happened the night before. So when I walked in her office she already had her back up. But after hearing the full story and the fact that Nikki had suffered a heart attack and that she was supposed to be in ICU, she called in the nurses in question and she told them that they had no empathy and that a child under 16 yrs. of age is considered a minor. She apologized to me and explained to me that they didn't have a ward manager and that they were in the process of getting one.
The days, weeks and months after this incident had become a morbid state at home for my little Nikki and me. We were both depressed and didn't know what tomorrow would bring. We started losing hope. I tried sending emails to East Coasts reach for a dream, but no response. I tried emailing a private ophthalmologist whom had seen Nikki in the past but the medical aid will not cover and he could not help. I sent an email to the Marfan Organization in Pretoria, still no response. I felt that all I wanted to do is help my child and I had just made matters worse. She didn't react well to the meds, we had to go to Dr Bayat at Addington to give her alternative medication, which obviously Addington didn't have in stock. I now have to spend R400 a month on medication because the medical aid has dried up because of all these appointments to Albert Luthuli. My lively, happy little Nikki became a couch potato whom just sat on her phone most of the time. I had to ask the school to excuse her from sport and any strenuous activity and I also noticed that since the incident her eyes have deteriorated even further.
On the 24th of June we went to see the cardiologist at Albert Luthuli for an appointment with Dr Govender and Dr Gounden. She was quite happy with Nikki but prescribed more medication. I asked her if she could please be present at Nikki's next op as I was afraid that something would go wrong. And she said it would be no problem.
On the 6th of August we went back to the eye clinic at Albert Luthuli for an appointment. Dr Chetty noticed that Nikki's eyes deteriorated and he said that we would book her for another op but that Dr Venter (the Head and professor) would perform the op.
We went in for another eye clinic appointment on the 29th of September, which I thought would be the pre op. They put eye drops to dilate Nikki's eyes and no tests were done whatsoever. We saw Dr Goosen (or Hoosen) and he confirmed that the op was booked for the 8th of October but that we would have to admit Nikki at 8am on the 7th so that the cardiologist and anesthetist could come and do their tests. He phoned Dr Govender in my presence and she was happy with being in the operating theatre at the time of the op. Apparently, Dr Venter had no idea that Dr Chetty put her down to do the op and she didn't want to do it. So Dr Goosen put Dr Chetty as the doctor to operate.
On the 30th of September I phoned Dr Govender to find out if I have to stop Nikki's heart medication 24hrs before the op and she said “no".
Poor Nikki didn't want to pack for the hospital. She was scared to go for the op after the last incident. I spoke to her and tried to reassure her that we have to trust the doctors and hope and pray that all will be well. Her response was: "but Mommy, you don't understand.... if something happens while I'm under anesthetic, I won't feel anything. What worries me is what will happen to you if something happens to me." I told her not to worry about me and that everything will be fine - little did I know!!
So...... at 7:30am on Wednesday the 7th of October we were in the ward waiting to be seen to. Dr Goosen was there and we chatted a bit. I then went to the front desk to ask to see Matron Green and the nurse told me that they now have a manager - Sister Z****. I asked to see her. When she came, Dr Goosen was there with me and I told her that Nikki needs the pre-op tests done and that Dr Govender and the anesthetist need to see her as she is a heart patient who has Marfan’s Syndrome. She told me that she knows everything about Marfan’s and that she knows what she is doing.
While waiting another little Indian boy's op was cancelled at about 12 pm - excuse was that there was not enough time. The parents were not happy at all. They were all the way from Stanger.
Nikki was sleeping on my lap waiting for a bed. They only got her a bed at 4 pm that afternoon.
No tests were done, no anesthetist visit and no cardiologist visit. I was told that Nikki was the first op at 8 am the next morning. I only left the hospital at 8 pm after visiting hours and went home.
The next morning, while I was driving to the hospital just after 7 am, Nikki left me messages on my phone that they were taking her to theatre already.
I rushed to the ward and the nurses were having a meeting and I asked if someone can please take me to the theatre to be with my child. They all looked at me as if I was speaking Swahili! I repeated myself three times before the male nurse tried to give me directions to the theatre. I eventually found the place and Nikki were in the waiting area. I put on my swabs and went to stand by her. I noticed that Nikki's theatre tag said "Dr Venter" - I thought that was weird cos Dr Venter didn't want to perform the op. The theatre nurse ( the same one that was present the last time that gave me the bad news) came to tell me that they could not do the op as all the necessary tests had not been done. I freaked out! I told her that it was unacceptable and that they would have to make a plan and that they could not cancel due to the staff's incompetence. I told her that they must bring in the next patient and then get Nikki's tests done in the interim and then bring her back to the theatre later or alternatively do the tests today and operate tomorrow. She said "no" and that they would have to re-schedule the op. I told her that every time they are re-scheduling I lose time off work and I'm a single parent and if I lose my job then who will take care of Nikki and that Nikki is also missing on school and that they have now sucked dry the medical aid and I have to pay cash for other appointments and medications. She said she would get me the manager. Another two ladies came and took me to the back office. I was fuming by then. They heard my complaints and said that they would get the head of the anesthetists in theatre who is also a professor (I cannot recall anyone’s names cos I was so upset and angry - He was a white man). He told me that they could reschedule for December and I told him that it was not good enough because the op would not necessarily improve Nikki's vision in the one eye and that I don't see why this op keeps on getting delayed because of the incompetence of the nursing staff in the hospital. Yes, I was shouting and he told me to keep my voice down and I told him that I wouldn't because I was so angry and upset and that all this is causing a lot of psychological and mental stress on Nikki and me. He promised that the next time this wouldn't happen and I told him that everyone in a higher position makes promises, but the staff under them do not carry through. I eventually started crying (I don't know why, I don't cry easily, but I guess that I have kept quiet since the heart attack and now every emotion possible came out). I told to do what he wants to do and that I would take this further. I started wheeling Nikki's bed to the exit door, two staff helped me to take her to her ward. I asked the sister there for sister Z**** (the manager) and she asked me what happened and I bellowed at her that because of sister Z****'s incompetency the op was cancelled. I helped Nikki to get dressed and I told her to post me the discharge papers. I bolted out of there as fast as I could cos I could feel that I was now getting totally out of control. If I had not left at the time that I did and if someone had tried to stop me I would have done something that I would have regretted.
Sorry that this is so long Trevor, I feel that I have written a book. But my experiences in the past few months at this hospital have been so bad that they have embedded themselves in my brain as if it was yesterday.
I really hope and pray that something can be published about this because I know for a fact that I am not the only unhappy person from that ward. I am now starting to doubt the "state" medical care in this country.
GOD HELP US ALL!!!!!!