The past couple of days have been hectic!!! There have been many questions surrounding Leah’s surgery and after some further pre-surgery assessing, the doctors have decided not to go ahead with the surgery that was booked for Friday this week.
Lets recap… during Leah’s first ENT appointment in February this year the doctor decided to remove her Tonsils and put in the ear tubes. The ENT who examined her at that specific time told us that the tonsils looked “big” so we should remove them; it was then that her surgery was scheduled for July the 17th. .Now I know it’s a long wait… but in South Africa if you are not knocking at death’s door you will wait, even if it means you have to wait 6 months… like we did. On Tuesday July 2nd we had an appointment scheduled at the ENT clinic to do all the necessary checks needed before Leah’s surgery … so what I decided to do for this post is to take you on a quick journey through the South African public health system just so that you can get a feel of what a trip to hospital is like for most South Africans who cannot afford medical insurance.
First we arrive at the Hospital at 6:00am and we hand our appointment card to the receptionist… then we take a seat and wait for Leah’s name to be called so we can collect her health record, at 7:30 am they call us we collect the record and proceed to the ENT clinic which is upstairs, there we once again place our appointment card and health record in the ENT reception box and we take a seat, judging on the amount of patients in the room before us we get number 42 stuck on the folder… so we are number 42 in the queue. I need to use the loo but unfortunately there is no running water in the toilets and they are in a state of UTTER DISGUST, so I decide to wait till we get home… so no more coffee intake for me and thank God Leah still wears diapers. At 11:30 (by this time my bladder has increase to twice its natural size) it’s our turn to see the doctor; we are informed that the rest of the staff is on Strike in an attempt for a pay increase. Some doctors in the Western Cape and other provinces have decided to “down stethoscopes” to protest their low income. The doctor then proceeds to ask me “So… Why are you here” Hmmmmmmm… “I don’t know Doc.. I just love hanging out here like the rest of the parents in the waiting area” needless to say he does not find my comment amusing. So I explain the situation and the doctor then decides to read Leah’s folder and says “Okay… you need to do a ear test “ but” that clinic just closed due to the strike, so what I will do is send you for you blood tests and then you come back to me and sign the surgery consent form” At that point my stomach turns and I feel distinctly uneasy as we are waiting for Leah’s blood test. I just could not shake the voice telling me not to sign the form just yet, Ashley just shook his head and said “ This doesn’t feel right” When we retuned to the doctor, he reschedules another appointment for Monday 6th so that Leah can get her ears tested one more time before the tubes get put in. We leave the hospital at 3:30pm. On Monday 6th I do the whole process again this time we finally get her ears tested the right ear is perfect but she has fluid and has lost some hearing in the Left ear, there is a distinct change since the last ear test in February…. I thought this would be enough motivation to have the tubes put in but the Doctor said it is not reason enough and we should come back in December for another ear test so I figure “Hell Yeah see you at Christmas we will just place a ear flap over the left ear that will probably be deaf by that time”!!!!!!!!!!!!! At this point I have had enough… and I am tired of being sent from pillar to post and I demand further test and reasoning…. And finally I get the attention of another Doctor that immediately takes over.
We spent the rest of the day in and out of tests to make sure the surgery would be in Leah’s best interest the final test was a sleep study and the results proved that it was not necessary to remove her tonsils as her breathing was fine, and the doctor seemed optimistic that she would actually improve as she grew… so it was not necessary to do the tonsil surgery but what about her ears???…. What I can’t understand is why they do not see the urgency in doing the ear tubes????? The fact that Leah’s Left ear has become WORSE and we have been through 6 EAR INFECTIONS this year alone… is that not reason enough to put the tubes in???? I’m confused…. And at the same time I am also relived that we don’t have to do the tonsillectomy.
Leah has been left utterly traumatized by all the medical examinations and blood samples, I have however decided to go for a second opinion about Leah’s ears, I do believe that this is something you just cannot leave unattended. What I have come to realize is that in the South African public health system you are nothing but a number and for this reason I urge all parents of little people ESPECIALLY IN SOUTH AFRICA to take note of the following:
- Educate yourselves on you child’s condition and the health issues linked to Achondorplasia or dwarfism in general.
- Don’t be afraid to question the doctors on their knowledge of Achondroplasia, and if they have worked with Achondroplasia patients before.
- Get the stigma of “my child is just small” out of your head because there are some big differences between a “normal” average height child’s anatomy to that of a child with dwarfism.
- Educate yourself about surgical procedure your child may have to have done so that you are fully aware of why it will benefit them in the end, this in turn allows you to be clear on all the risk factors involved when performing a surgical procedure on a patient with dwarfism.
- Educate yourself on anesthetic precautions in dwarfism.
- Last but not least listen to your instinct, we all have it …and sometimes it should not be ignored.