Gill was born in July 2006 after an extremely difficult birth. He was eventually delivered after becoming wedged in the birth canal, though his head had been born his shoulder became severely stuck behind my pubic bone due to a forced vacuum delivery. He was oxygen starved for 12-15 minutes before a symphisiotomy was performed. He was essentially dead. The team of doctors then took my blue baby away and attempted to resuscitate him.
I was taken away for repair surgery which took a considerable time and didn’t see Gill much later. Doctors told me he would probably not make it through the day. He was put on a ventilator and was having seizures and chances of survival were poor and if he did survive I was told he would not see, hear or “know” me. That he had no suck, swallow or gag reflex, no Morrow or threat reflex. He fell into category three of a selection of outcomes of Hypoxic Ischemic Encephalopathy. It was bleakly stated to me that in this category most babies die.
Gill was a mesh of wires and tubes
I met Gill for the first time much later that day, he looked like he’s been in a car wreck, he was bruised and bloodied and had a misshapen head, it almost looked dented. He was a mesh of wires and tubes. He was soon put on Phenobarbital for seizures and the little bare spark that was in him seemed to vanish. Given his prognosis of pretty much vegetable status we asked that Gill be taken off the medication and ventilator. He began to come around and become the little fighter that he still is. At the end of the week we were transferred to another hospital.
After six weeks of remaining in hospital he gave his first cry, I laughed and then became overcome with joy and cried too. Not only could he cry he could hear. We were trained in inserting an nasal gastro tube and resuscitation technique. We were sent home 7 weeks after Gill was born.
Gill moved continuously while awake, though he slept well at night. He was tube fed from birth.
Formally diagnosed with Diskinetic Cerebral Palsy
At two he was formally diagnosed with Diskinetic Cerebral Palsy. He has never been able to sit or crawl although he has always been really active on the floor. We were picked up by the intellectual disability services on leaving hospital where we got regular Physio- Therapy, Speech and Language Therapy, Occupational Therapy.
At two and a half Gill had his first seizure since birth it went on for an hour and a half, we were back in hospital, him blue again in the ambulance on the way. I thought I had lost him again. He now had epilepsy and still does. I had always felt that Gill understood what was going on around him and that he wasn’t intellectually compromised. As he approached 4 the Early Intervention services at COPE Foundation were beginning to agree with me. While I continued to find alternatives to helping Gills physical inabilities, little seemed to help. We went for a lot of Cranial Sacral therapy, did the Brainwave program for a few years but little made any marked improvement. Gill started mainstream school though he is non verbal it’s going well. Though he does tend to pick up just about every bug going and misses a lot of days.
He has always taken food orally and hydration via peg but had been put on Nutrini for “complete nutritional needs” by his dietician. I always felt how can I possibly expect him to eat more if he is full of this nasty stuff. Gill has suffered from acid reflux from birth and was up to adult level doses of 3 anti-reflux medications. I had more or less resigned myself to this being it but the reflux was such a problem and feeding routines seemed to be determining Gills whole daily schedule.
TST: a new world opens
I eventually found my way to Linda on another Mums recommendation. I came with little expectation and thought “if we can just do something to help his reflux a bit”. We came at the end of April 2013 and Linda discussed diet and we have made big changes. We started the home exercise program. We started on a more Alkaline diet immediately and within four days of just swapping out his last Nutrini feed of the day to a soup and replacing his Weetabix with Millet porridge for breakfast, the reflux pretty much stopped. I gradually changed the entire diet and he is thriving on it. Eating huge portions of a vegetarian diet and lots of Avocados with water, coconut milk and soups down the peg for hydration. I reduced his medications gradually and within 6 weeks he was off ALL anti-reflux medications.
Reduction in unwanted movement
In addition he is much quieter in himself, at first I thought he was coming down with something as the Diskinetic movements had vastly reduced. I was worried there was something wrong. Gill was so much more still, it was worrying, turns out that I he was just getting used to this new quieter body of his. He now can sit straight on a Physio bench with both feet on the ground (not stepping up and around wildly) no longer thrusting from his hips and weight bearing though his hands with his head up! He needed three people to help him do this before. His Physio therapist and OT are blown away by the changes and have given him extra sessions to help build on the improvements. He is sleeping so much better at night and getting more to sleep more easily and we don’t have to sit him up the 4-6 times with reflux episodes. His focus at school and ability to apply himself have been commented on by his teachers. His eye contact is much better. He is starting to chew rather than just move food about.
Gill is doing fantastically
I can allow hope back something I was even afraid to dream about again. Gill is doing so well since we came to Scotson and we’ve only been twice so far. He was seven when we came first and from everything doctors tell you about the brain and its neuroplasticity I really thought it was all going to be too late. We are getting on great with the exercises, he’s doing things in Physio I never thought possible for him. You are like our fairy god mother who has granted the best wishes imaginable!
We are due back soon and I look forward to seeing you then. Gill is doing fantastic, I’m so proud. And grateful to you.