A Mothers Hope: Part 5 - Standing firm on HOPE

Posted by Susie Bartlett on

Confidence is hard to grasp and hang onto, when those you put your confidence in, are all searching in the dark.
Proverbs 3:5-6 Trust in the LORD with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will direct your path.
By four months old Janelle's condition was deteriorating and the oral steroids had failed. The next step was to inject steroids intravenously. This meant being admitted to hospital, having the steroids administered through a drip, being very closely monitored for 24 hours, then getting sent home because her immunity was compromised and the risk of catching something in hospital was too high. We then had to stay housebound for six days, had a couple of days of freedom, then back to the hospital to repeat the process. Again it was trial and error with risks and side effects involved. Unfortunately after about four rounds, it didn't change anything, the aggressive condition grew and it was now termed 'Massive Hemangioma'.
During this time we had an unscheduled emergency trip to casualty one night. Blood tests, catscans, photos and measurements were constantly taken to monitor growth or possible regression, so while cooking dinner one Friday night, I got a call from the hospital. They had received some blood test results back and it was showing that Janelle had developed Galactosemia. This is a rare genetic, metabolic disorder that affects an individual's ability to metabolise the sugar galactose properly. I was told to put Janelle in the car immediately and drive directly to the hospital or else she could be brain, kidney or liver damaged within hours.... I left straight away and contacted our Pastors, John and Jocie, to pray. I was also praying most of the trip, and was determined to get there as quick as possible. However I came across police, breathalyser testing, and there was a queue of about ten cars. I didn't hesitate when I bypassed the line, drove straight up to the officer and told him I had a sick child in the backseat. He only had to take a glance back there and told me to drive safe and be on my way. At the hospital we were rushed into casualty where we met the doctors who told me the tests were positive for Galactosemia, however they would take blood again for further testing....it would be midnight before the results would come back. I can honestly say those four hours were consumed with the most powerful prayer time that I have ever had. I stood firm, declaring my baby had enough to deal with and she would not have this disease. On and on I prayed out loud, I don't know what the people in the next cubicle thought, but I didn't care. I had had enough and I wasn't taking it anymore! Midnight came around and so did the doctors, with the wonderful news that she was clear and could go home. They had no explanation for it, what had shown to be there was now gone. It was an amazing victory in a valley full of tribulations.
By this stage Janelle's eye was pushed quite a distance from her face, kind of like half a tennis ball was under her skin. This made it impossible for her to shut her eye. During the night I had to set the alarm to put drops in her eyes to prevent it from drying out. More than once, on the rare occasion that I was home, I would promise my other two children that in the morning mummy would take them to the park and we would have a day of fun together. However Janelle's eye or breathing would deteriorate during the night and by morning when the children awoke, Janelle and I would be gone back to the hospital. It broke my heart. One time the ambulance was called because Janelle started vomiting up blood, there was always a risk that at any given time the birthmarks would rupture and she would haemorrhage. Just one more thing to worry about and add to the list of concerns a mile long. Would this nightmare ever end?

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