20 November 2011
Letter to the Editor -Sunday Times-
We believe a response is warranted to the article dated the 13th November 2011 “Couple battle insurer over Down’s child”. What struck us most about the article was how accurately it depicted similar events that played out in our own lives some eight years ago when our daughter Rebecca-Paige greeted the world early on the 16th August 2003. On reflection we could only have wished for the expertise and guidance of medical malpractice attorney Mervyn Joseph to act as our voice at a time when we were silenced by the sheer magnitude of the events that transpired. We were vulnerable, young, innocent and trusting. In a modern world that demands ownership and responsibility we shouldered the cards dealt to us with quiet, complacent, submissive obedience. Never did we consider the thought that our misfortune could eventuate in a malpractice suit against the doctor we had entrusted with the wellbeing of our unborn child.
Rebecca-Paige arrived via emergency caesarean section after premature labour and foetal distress was confirmed, the day after our gynaecologist pronounced her 100 percent healthy. Her premature delivery was an indication of the tumultuous road we navigated as one misdiagnosis followed another. Rebecca’s dire condition was critical. Rebecca had a floppy larynx, holes in the heart, hypotomia, absent corpus callosum and abnormal brain anatomy, severe clubfoot, diabetes insipidus, physical syndrome features and seizure disorders that were later attributed to a rare chromosomal disorder named Trisomy 5p. Despite the severity of her condition, nothing was ever detected on ultrasound scans during the pregnancy, hence no triple tests or aminos were administered. Medical literature described her condition as “incompatible with life”. We watched her struggle for every breath; amidst all odds she survived the critical 72 hour window period and her fighting spirit coupled with medical intervention saw her agonise for nine long months until her death from a chest infection in May of 2004.
Rebecca-Paige spent the first four months of her life in the NICU. She breathed via a tracheostomy and was fed via a gastrostomy. On the advice of her doctors, she underwent numerous surgical procedures. She was a pincushion of needle marks and bruises. We had to learn to minister to all her hourly medical needs with expertise that resembled that of a trained NICU nursing sister. Life with Rebecca was facing death at every turn, living on a flow of adrenalin and heightened vigilance. She was discharged to our home where she spent her days hooked up to the machines in our bedroom turned makeshift ICU unit. Her return to the hospital was a usual bi-monthly occurrence as she suffered from chest infections caused by the hospital super bugs which eventually resulted in her permanent oxygen dependence. During this time, our lives unravelled due to the constant strain. Financially, we were drowning and work suffered mirroring Rebecca’s decline. In the year of Rebecca’s life the estimated cost to the medical aid was approximately R 1.2 million. We had to arrive at the out of hospital costs ourselves, for example her booties to correct her clubfoot, her expensive medication and machinery once at home and the salary for the services of a nursing sister to provide much needed respite care to relieve us of the 24hour nursing care she required to live.
After her passing; bereaved and emotionally scarred we made detrimental decisions that tainted our credibility and resulted in our financial undoing. We lost everything: our home, cars and business that had successfully supported us. Psychologically we were devastated and traumatised; the accumulated stress resulted in the dissolution of our marriage. We truly hit rock bottom in every aspect of our lives. It has taken years to rebuild from the bottom up and to recover a semblance of a normal life. Despite the enormity of our situation we chose to find the meaning in the suffering and derive a sense of purpose out of the tragedy. Our divorce gave us the necessary space to heal the wounds of the past. Luckily we found each other again – a love strong and resilient culminated in our reunion.
Today we have two beautiful, healthy girls aged 6 and 3 despite our limited chance of conceiving a healthy baby at each pregnancy, symbolising our ability to challenge adversity. We refuse to remain silent; we have found our voice amidst a streetwise sense of what is right, learnt in the school of hard knocks, our aim to stir debate on this hotly addressed topic. Over the past five years we have written a novel of our experiences called The H.A.R.D. Way, which documents how we have grown through adversity to become the victors on the other side. The cathartic expression is a story we believe needs to be shared. Our manuscript is currently represented by literary agents to prospective publishers; we are hoping for positive feedback in the near future to witness it touch the lives of other families who have endured similar tragedy. We encourage parents to be aware and cognisant of their rights to be looked after competently by their chosen medical professionals. We have lost our opportunity to seek financial retribution in the form of a claim against the gynaecologist who played a pivotal role in the way our lives were forever changed. All we have is our story and a belief in the opportunity to share it with the world in the hope others will not have to endure what we did. We commend Tayla’s parents and the efforts of Mervyn Joseph to secure financial compensation from the Santam Policy in question. It takes special parents to cater to the special needs of a damaged earth angel. We wish you strength in your journey and may you be afforded the necessary means to give your precious child everything she and your family deserves. It may feel like it was a mistake, but doctors are only human with human failings. We choose to believe everything happens for a reason. Rebecca, thank you for the many life lessons you afforded us on your earthly journey and may you continue to brighten the Heavens with your endearing smile and unconditional love. No amount of money can replace the dreams and expectation of a healthy child but will certainly lift the burden that descends with the financial implications of such a tragedy. In a predicament where choice is snuffed out by the incompetence of the medical profession; a degree of onus needs to rest on the doctor’s insurance cover to shoulder the lifelong financial responsibility of a child destined to live a life with special needs.
Neville & Donna Staples