I am reaching out to you today for my daughter and granddaughter. I am aware that this is a lengthy letter to read, but please take the time to read it through, as I added as much detail as possible to tell their story.
In 2005 my daughter gave birth to a beautiful little girl that she named Kayle. During the first few years of her life, doctors found that she had a heart defect and that she was deaf. When she turned four she had to go for surgery to fix her hearing but when she came out of theatre she bleed profusely. None of us at that time knew any better and believed it to be normal.
In 2004 my late husband was diagnosed with an occupational disease and wasn’t allowed to work any more. I took all the financial responsibility for both my granddaughter and my late husband’s medical accounts, which I still owe on. We decided that Ivy would stay at home to take care of her father and Kayle as her salary would not be able to cover costs, I proceeded to work on construction and most of the time away from home.
Every now and again Kayle’s nose would bleed and we could get it stopped. A few years later, when she was 7 years old, during a visit to her father’s parents she had a terrible nose bleed and was rushed to the hospital, where they struggled to stop the bleeding and stayed in the hospital for about a week.
The doctor that treated Kayle took her condition seriously and referred her to Charlotte Maxeke Johannesburg Academic hospital where she was diagnosed with von Willienbrand disorder - Type 2 factor which means she has a total deficiency of the von Williebrand factor. At the Haematology Department where Prof. Pool and Sister Bongiwe take care of Kayle they explained that Von Williebrand disease is a lifelong bleeding disorder in which your blood doesn’t clot well. Most people with the disease are born with it, though its warning signs may not show up for years. Most people with this condition inherited it from a parent. They have a faulty gene that causes problems with a protein important to the blood-clotting process. Von Williebrand disease can’t be cured.
In 2016 Ivy was diagnosed with Von Williebrand as well, when the test showed her blood count as 3 where it should be 30, she was placed on a high dosage of medication for 6 months and is doing much better now after the treatment.
Kayle was diagnosed at the same time with a circumferential discrete sub-aortic stenosis resulting in obstruction to the left ventricular outflow tract. The doctors and professors monitored her for the next few months and then told Ivy that they have to operate on Kayle’s heart, however, they can only give Kayle 1% survival if they do the operation and if Ivy decides not to do the operation they can only give Kayle about 2 months to live. A child that suffered from the exact same conditions did not make the operation 10 years prior to Kayle. We were aware that our chances are slim but we had to do what we had to do, to save Kayle’s life.
At this time Kayle would stop breathing at night, however, her doggie slept with her and if she stops breathing he would bark and Ivy would run to turn Kayle and do what is needed. The private sector doctors refused to touch Kayle as they were not prepared to take the chance. When the doctors at Charlotte Maxeke Johannesburg Academic hospital told Ivy we must precede as soon as possible with the operation, she nearly fainted and wanted to know what would happen if she loses her child during this operation. I had to stand strong although I felt me; I wasn’t emotionally strong to cope with this situation. I explained to Ivy that if something would happen, she would definitely know she was the best mommy that Kayle ever could have in this entire world.
After loads of tears and prayers, Kayle was admitted into the hospital on May 22nd, 2013 and she was taken to the theatre by the Cardiothoracic Surgery Department on June 3rd, 2013 for DSAS resection which was performed under Factor VIII coverage. After the operation, Dr Naidoo fell back in a chair when we asked him if the operation went off well, he told Ivy that the next 24 would determine the future and if Kayle makes it would be the biggest miracle he ever had part of and this is now the time to pray.
Kayle was placed in ICU and we were allowed to go and see her for a few minutes. She was completely swollen, at that time and we were very emotional. After two days in ICU they moved Kayle to high care, after 2 weeks she was moved to the normal ward where she was monitored until she was discharged on June 21st, 2013. Ivy slept next Kayle’s bed, on the floor for the time Kayle was in the hospital. When they got home, Ivy was told she doesn’t have a job and they paid her off adding to the already mounted stress.
The doctors told Ivy that Kayle might have to learn to walk, talk or have other defects after the operation, however that didn’t happen but she struggles with concentration when her iron is low. After the operation her teeth twisted, she now needs braces and Ivy cannot afford it at the present moment.
She follows up regularly at the outpatient clinic, March 31st, 2018, she has to see the doctors and professors again and we struggle to get the funds together. With her last visit in October 2017 they found the following:
• No residual DSAS or left ventricular outflow obstruction
• Good LVF: 41/26/39%/70%
This wasn’t good news to us although moderate:
• Dilated right heart with moderate tricuspid regurgitation
• Trivial aortic regurgitation and mitral regurgitation
and recommended a 6 monthly follow up at our clinic to monitor the right heart dilatation and tricuspid regurgitation. (Taken as per the report of Drs Koch, Nagar and Motara, CMJAH Department of Paediatric Cardiology.)
We live in Phalaborwa which is quite a distance away from the hospital. I am currently unemployed and cannot assist them. We do not have the funds to move to Johannesburg and even if it was possible, Ivy would have to give up her job to find a new job in Johannesburg which is a struggle in itself. Ivy recently started to work however she earns a small salary and cannot even afford rent. We are currently living with my eldest daughter who doesn’t have it broad either, however they try to help.
Kayle’s father started to pay maintenance in 2013 and came back into her life August 2017 after he separated from his wife, but he have to take care of her brother and sister living with him from his previous marriage. He is currently in a relationship where there are two more children he needs to care of
Ivy’s biggest dream is to study as a bookkeeper to provide for her daughter, but with her current situation, it is impossible.
I hope reaching out to others will help ease the current stress for the situation they are in, give me peace of mind and hopefully find the funds needed for them to proceed.
Thank you for allowing me to tell their story, and for you taking the time to read about their situation.