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Edward’s Syndrome is a genetic disorder that affects mostly girls, causing serious defects in the brain, heart, kidneys and stomach. There is currently no cure for Edward’s Syndrome and treatment today, consists of palliative care. Many children born with Edward’s Syndrome do not get to celebrate even their first birthdays. The few that do, experience severe developmental disabilities and have problems with breathing, sucking and swallowing.
I was overwhelmed after meeting two beautiful girls suffering from Edward’s Syndrome, in one day.
Joy is three months old and very tiny. She was asleep when we arrived. Our nurse roused her, and when she awoke, she seemingly playfully started blowing little bubbles from her mouth. When our nurse lifted her with her palm, Joy only reached half of our nurse’s forearm. Strapped around her little head, which was no bigger than an apple, was a breathing tube leading out from the tiniest of nostrils. Plasters were pasted around her nose so that the breathing tube would not be displaced. Joy was on a special milk formula to aid in digestion since her stomach was not functioning well.
Beautiful Joy is the first child of her parents. Mummy continues expressing her breast milk a few times a day, in the hope of being able to feed Joy with it one day. Daddy is so proud of Joy, cleaning and bathing her single-handedly. Although both of them understood the prognosis of the disease, they still expressed their desire to see Joy growing up normally. It was heartbreaking for me, but like all parents, they had hopes of a miracle for baby Joy.
We went on to see Joyce. Another beautiful girl, Joyce, is three years old. She is the youngest of three girls. Mummy was feeding her when we arrived. Joyce needed to be fed with a tube going straight into her stomach. The hole was protected by a “button”. Joyce was awake but did not make any noise, except for the occasional gurgling caused by her mucus. Our nurse carried Joyce into the bedroom to do “suctioning”. The process involved inserting a very small tube into Joyce’s throat to extract any mucus. This sometimes causes retching but allows the sticky mucus to be expelled. Joyce seemed more comfortable after suctioning.
Last July, Joyce had been gasping with breathing difficulties and was sent to the hospital’s emergency ward. At that time, Mummy had prayed for Joyce to die painlessly, so that Joyce would not suffer. I felt Mummy’s pain. Which parent would wish for their child to die? However, Joyce was a fighter and lived that episode. Mummy had previously confided in our nurse – she keeps wondering why this disease should strike Joyce when her older sisters were fine. Mummy was stoic but seemed sad. She continuously busied herself with her two older girls, aged four and seven. I was glad that Mummy was able to bake bread together with her two older children.
One can never tell when you get thrown life’s curveballs. Joy’s and Joyce’s parents have each been thrown life’s curveballs. We pray for them and all other families with such heavy burdens – that they can endure, no matter how difficult. We count our blessings when our burdens are lighter!
regards angie
