Our precious little Ruby Jade Ballack was born on Wednesday, 21st of November, 2001. Her name, Ruby, was chosen by her father, Wayne, before she was born, as rubies are his favourite stone.
When Ruby made her entrance into the world at 08h05 that morning, weighing 3.2kg, we were stunned that she had red curly hair. The name Ruby suited our little princess perfectly.
At seven months, it was discovered there were some issues with the sutures of Ruby’s skull. This resulted in numerous visits to the Craniofacial Clinic at Charlotte Maxeke Hospital. We faced the possibility of her having to have brain surgery, but after five years, doctors told us that the “problem” had resolved itself and that Ruby would not need surgery after all. They told us we no longer had to come in for regular check-ups.
Ruby was such an adorable toddler that I was often stopped whilst out shopping, by people who remarked that she didn’t look like a typical redhead, with light skin and eyes. Her olive skin and dark brown eyes were quite unusual for a redhead.
With two older sisters, Cayla and Krystle, Ruby was the baby in the house. Such a cutie pie, she was the apple of our eye. She often battled with sinus and bronchitis, but other than that she was healthy and very active. Riding her bike and spending time with her animals were her favourite activities. She simply loved being outdoors.
Ruby was such a petite little thing, that when she started “big school” I was worried she might be bullied. But then she got into the car one afternoon after school and told me how a boy in her class had “stolen” her tuck money. She explained that she had marched right past the receptionist and other admin staff, straight into the principal’s office to plead her case.
The headmaster, Mr. Louw, told her that she should fetch the boy in question and bring him along to his office so that he could address the matter with both parties present. She duly fetched the boy from the queue at the tuck shop, and the matter was resolved to her satisfaction, resulting in our Rubes getting her money back.
Listening to her dramatic account of events, I realised nobody was going to mess with this little redheaded Scorpio, as she certainly knew how to stand her ground.
In April 2014, West Rand School hosted a Mr & Miss West Rand School contest. Of course, our little tomboy wasn’t interested in participating. I had to bribe her with R200 to participate. Another R100 was negotiated if she was required to smile. Ruby had a head for business, that’s for sure!
She chose a dress in purple (one of her favourite colours) and a friend did her hair and make-up. She looked like a true princess that night and basked in the attention and compliments she received. We cheered, chanted her name and she ended up being crowned the first princess. Gosh! I could have burst with pride that night, bawling my eyes out over my baby’s special achievement – bear in mind that she carried off this feat even without modeling classes.
On the 4th of September that year, Ruby became a big sister when our “laatlammetjie”, Nika, was born. Whilst I was expecting Nika, I told Rubes that even though I was having another baby, she would always be her mommy’s baby.
The end of 2014 turned out to be another highlight in Ruby’s life, as she won the Arts & Culture trophy for the Senior Phase and to top it all, she was chosen as a prefect for 2015. I could not stop crying as I was super-proud of her.
We applied to Krugersdorp High School for admission for Ruby for 2016, as they had an excellent art department. On the day the schools closed for the June/ July holidays, we received an SMS informing us Ruby has been accepted as a scholar for 2016. We were over the moon!
During the last week of the holidays, Ruby fell ill and was treated with antibiotics at our local pharmacy clinic. After almost four days on antibiotics, her condition had only worsened.
We rushed to the clinic to get a referral letter from them, as state hospitals refuse to treat patients without a referral. Chest X-rays were done, which showed Ruby had pneumonia. The doctor also mentioned that it looked as though she had an enlarged heart. She was sent home with antibiotics and pain meds. She was given antibiotics intravenously, and before we left and we were instructed to bring her back in a month.
After a month, she was still suffering from a persistent cough. We arrived for the follow-up appointment and Ruby was seen by a different doctor. I mentioned that the previous doctor had said it looked as though she had an enlarged heart.
The new doctor examined Ruby thoroughly and kept on looking at a pulsating vein on the lower right side of her neck. He listened to her heart a few times and I just knew something was very wrong. After the results of an ECG and chest X-rays came back, all hell broke loose… The doctor anxiously clasped his head as he looked at the results and he kept muttering, “Ag no man.”
When the doctor revealed that Ruby’s heart was two-and-a-half times the size it should be, I was dumbfounded. How was this even possible? The news shocked us to the core. Ruby was hospitalized for a week whilst numerous tests were done.
We had often joked about who loved the other one more. For instance, One would say,” I love you more than all the sea sand in the world,” or “I love you more than all the stars in the sky.”
When she was little, Ruby would say: “I love you millions, and millions, and millions, Mommy.” After she was diagnosed as having an enlarged heart, her new line was: I love you more for sure now, because my heart is bigger.”
Two weeks after she was discharged, a cardiologist from Johannesburg’s Helen Joseph Hospital traveled to Leratong Hospital in Krugersdorp, where we live, to examine Ruby. It was my birthday, the 25th of August, and I will never forget that day.
Dr. Tom recommended that Ruby travels to Helen Joseph Hospital three days later. That day our lives changed forever. Ruby was diagnosed with Restrictive Cardiomyopathy. Only one in a million children suffer from this rare and deadly disease. She also suffered from Pulmonary Hypertension – high blood pressure in the lungs, which is also a very rare disease. Ruby was only 13, a few months shy of her 14th birthday.
This disease is terminal and the prognosis is that only 50% of children survive to the two-year mark after presenting with symptoms. Since Ruby’s liver was enlarged, she tired easily, was often dizzy and constantly nauseous.
We started a campaign called “Hope 4 her 16th”, to raise awareness for organ donation, as we were advised that parents rarely donate their children’s organs after they have been declared brainstem dead. Ruby’s chances of getting a transplant were especially slim since she needed not only a heart but also a bi-lateral lung transplant. She was extremely petite and finding a match in size would be a tremendous challenge. The one thing we thought might count in her favour was the fact that she was a universal recipient, her blood type being AB+.
We held fundraisers and conducted awareness talks wherever and whenever opportunities presented themselves.
Ruby was placed on the transplant list in April 2016. She was prescribed warfarin, a huge dosage of Lasix, another diuretic called Spiractin and potassium. She had pneumonia three times in one year and underwent three heart catheterizations. She had numerous blood tests and had five pericardial taps, where fluid was drained from the lining of her heart through her chest, an extremely invasive, not to mention painful procedure.
In a matter of a fortnight (December 2016), she was admitted once to high care and twice to cardiac ICU, having experienced seizures. After the second seizure (which occurred at a Reach for a Dream event arranged in her honour), her heart rate spiked, which meant she had to be shocked. The week after that, her heart stopped during her last catheterization in theatre and she had to be shocked once more.
Ruby was placed on the priority list in February 2017, but from about March 2017, her health went rapidly downhill. In the last six months of her life, she had weekly blood tests and visited her cardiologist, weekly or even bi-weekly. Her hair began falling out, she lost more and more weight and on the 15th of June, at 1.6m tall, she weighed a mere 38.9kg.
Ruby spent her last two or three months in a wheelchair. She scarcely smiled anymore and was in constant pain. She struggled to breathe and described Pulmonary Hypertension as feeling like she had a plastic bag over her head, and was gasping for air. I rubbed her back every night, which relieved her pain for only a little while. Panado was all that could be administered for the pain, as nothing else was safe to take.
I often felt tearful when rubbing her back since her little ribs and spine were clearly outlined under her skin. It broke my heart to see her suffer, but I had to bite back my tears as she hated it when I cried.
For five months, I slept on a mattress on the floor next to her bed, as she was afraid something would happen to her during the night and I might not hear her.
On the 16th of June, we checked into a lodge near our home. A fundraiser was being staged for Ruby and I had an awareness talk scheduled for that afternoon. We were given a complimentary room for the evening, a treat for Ruby, who had grown tired of either being at home or in the hospital all the time.
Early that evening, we were chatting in the hotel room, making dinner plans whilst her baby sister had a nap. As Rubes was lying on the bed, under a sheepskin blankie my friend had bought for her earlier that week, she mentioned that she’d like a Happy Meal for dinner. Shortly afterward, she told me she was feeling dizzy. Ruby subsequently had a massive seizure and her heart stopped.
I kneeled on the floor next to her bed and saw she was not breathing. I knew this was different from the other seizures and that we were in trouble. I phoned the area manager of ER24 to send help and then Doctor Tom.
I tried to resuscitate my baby, but I could hear the fluid in her throat. Not long after I had started CPR, the first paramedics arrived. I phoned my fiancé, my other kids, family, and friends. Many people arrived at the lodge to offer support.
Ruby was intubated and after an hour of CPR, a woman paramedic came to tell me they would not give up, but that they wanted me to know, if they did manage to get her to breathe, Ruby might have sustained brain damage. I told her to please keep on trying.
Ruby was transported to Krugersdorp Private Hospital by ambulance, and CPR continued for another 30 minutes. Finally, the doctor on duty came to inform me they had tried their best, but Ruby was gone.
The paramedic I’d spoken to before came and hugged me. She was crying and said she was so sorry, but they had done all they could. I replied that I knew they had done their best and thanked her for trying so hard.
Ruby died at 17h45. She had pulmonary oedema (fluid in her lungs) and her heart had stopped, her little body had been battered by RCM and PH. She simply had no reserves left.
As Ruby was an organ donor, I asked the doctor if we could perhaps donate her kidneys and pancreas, but she had gone without oxygen for too long, so her organs were damaged and could not be used.
Ruby was the bravest person I have ever known. She endured so much and never complained, not ever. She was the most caring person and even in the darkest time in her own life, still prayed for other sick friends, also awaiting transplants. She inspired so many with her bravery.
Many family members, friends, and strangers became organ donors because of her. She was part of a research project on cardiomyopathies at Groote Schuur Hospital, where she contributed to the future treatment of cardiomyopathies in other patients. Because of her, the door to the private sector was also opened for future state patients requiring transplants.
Ruby was a hero in her own way. Because of a little girl with curly red hair, other state patients have a better chance of getting the help they need. I am proud to call myself Ruby’s mom, it has been such a privilege to be her mother for 15 years and 7 months. I will love her and long for her for the rest of my life.
If you haven’t done so yet, have the discussion, make a difference. Somewhere out there, adults and children like Ruby are waiting, hoping for a second chance.
Hope is what kept us going, and while Ruby didn’t get the miracle here on earth that we were hoping for, she did get her miracle after all.
My prayers are with those who are waiting, as well as with those who are still fighting the fight after transplant since it is a journey full of challenges. I pray for the families of those who lost the battle whilst waiting, and the families of those who lost the battle after transplant. I also pray for those who have had to make the most difficult decision during the time of their greatest heartbreak. I salute all donors and their families. God bless you all.
If you have not already registered as an organ and tissue donor please do so by clicking on the register here button and filling in the form. Be A Hero to someone one day.