I’ve never understood why some of life’s biggest battles were given to the smallest of children. That was until I met my son, our first child, 17 months ago. Who knew such a tiny creature could have the heart of Phar Lap, the courage of a lion, and the bravery, resilience, and fight, of a full grown man. This page has been set up to Help Cooper Eat, because sometimes even superheroes need a helping hand. Our boy Cooper, has already endured more in his short time on Earth, than most would in a lifetime. Here’s his story…
Cooper suffered very serious birth complications, which resulted in our baby boy being born lifeless. He went into cardiac arrest after becoming stuck during delivery, and required life- saving medical intervention for the first two weeks of life. We spent a month in hospital, and his ill health and associated risks of attempting to feed, prevented him from developing and establishing the early feeding skills infants instinctively use in their first weeks of life. From day one, until 13 months of age, he was fed all nutrition through a Naso- Gastric Tube (tube inserted through his nose, and into the stomach), which came with an enormous amount of responsibility, problems, and ongoing trauma for Cooper. From very early on he had been defensive and frightened of anything that resembled, and reminded him of, the intrusive medical intervention he received in hospital. A bottle, spoon, sippy cup, teething toys etc, were all seen as threatening through his eyes. This aversion to eating and drinking left our 13 month old son with an escalating dislike of food, and meal times in general, as well as significant developmental delays, problems with weight gain, limited and unco-ordinated oral motor skills, serious bouts of gagging, choking and vomiting, and every two weeks we took him back to hospital to have his tube replaced. This experience was always very traumatic to say the least, and set us back once again on our difficult journey to help Cooper eat.
For Cooper to progress to eating and drinking like his peers, he required intense daily therapy in a safe and familiar environment, and a tailored tube weaning plan from experts in this specialised field. Unfortunately Australia has limited expertise in this field. In May last year, we embarked upon a huge four months of fundraising to bring an expert in this specialised field- Dr Markus Wilken, to Australia from Germany. Markus is a Clinical Developmental Psychologist (Owner and Director of the Institute of Paediatric Tube Management and Weaning), and he was able to single- handedly provide the tube weaning treatment Cooper desperately needed, which was not available to him in this country. This rapid tube wean was not easy, it was an incredibly exhausting and stressful two weeks for all involved, however at the end of this time, we made some amazing discoveries, and incredible progress, that we never had a hope of achieving without Markus by our side. We were thrilled to find that Cooper could eat and drink, and do both quite well, considering he had never done either in his life. He could also do both safely. Markus gave us the skills, tools, confidence, and knowledge, to help our son become an eater, and he gave him the gift of a more independent and normal life.
At the end of the wean, unfortunately the feeding tube was still in place. Cooper was eating, and eating well, however he wasn’t drinking enough fluid to stay hydrated and thrive. We made the difficult decision in October to have a PEG (percutaneous endoscopic gastronomy) feeding tube placed in his abdomen, so the naso- gastric tube could be removed. Within twenty four hours of the new feeding tubes placement, Cooper became gravely ill, and we found ourselves running beside his cot on the way to theatre, signing consent forms, so our son could have emergency washout surgery. Surgery that would save his life. He had suffered secondary peritonitis, as the PEG leaked, and within hours of developing this condition, an incredible infection spread throughout his entire abdominal cavity. Cooper was taken into theatre, and we were given no indication of what the outcome would be, it was terrifying. How could we nearly lose our son again??! Cooper spent a month in the PICU fighting for his life, and our brave little soldier survived. For the next month and a half we battled a gaping hole in his abdomen, which was too big for any Mic-Key button (during the washout surgery, the PEG and it’s backing were ripped through his abdomen wall, essentially tearing it apart, as a PEG should not be touched for three months. The PEG was then replaced with a Mic- Key button, which is a low profile, much smaller feeding tube) they had, and Cooper had to then endure VAC (vacuum assisted closure) dressings which gave him third degree burns, silver dressings, poking, prodding, being fed by NJ (Naso- Jujenal) tube into his intestine…. We found ourselves in a worse situation than before we started all of this, with a little boy who had become terrified and defensive of everyone again, was completely battered and bruised, and who was not allowed to eat or drink anything orally for this whole length of time in hospital. Prior to September we had a boy who refused to eat orally, no matter how much we tried to encourage it, and now we had a boy who was now desperate to eat, but we had to refuse him, as his stomach was so damaged from the surgeries, it was leaking uncontrollably, so it couldn’t be used.
Fast forward till now, and the last three months have had a damaging effect on Cooper’s eating and drinking. Every spoonful or sip is quite an ordeal, we have an unpredictable and unreliable feeding tube, Cooper has lost weight again, he is also very confused and angry about all that has happened… Understandably. He has taken an emotional and psychological battering, as have we all, and we now need the assistance of Dr Wilken again, to combat Cooper’s feeding issues once and for all. This time though, we will need to bring in the big guns!
Markus has a speech and language pathologist that travels the world with him, to assist in the most intensive and tricky weans. Cue Stephan Echtermeyer, an experienced speech therapist (owner and director of Sprachpuzzle), the hands- on master, who specialises in tube weaning and Castillo Morales Therapy.
How Can You Help?
With your generous support and donation, you can provide Cooper with the opportunity to combat his psychological fear and anxiety towards eating and drinking once and for all. The money raised will be used to bring two experts in this specialised field- Dr Markus Wilken, and Dr Stephan Echtermeyer, to Australia from Germany. Markus and Stephen will be able to provide the life- saving, consistent and intensive tube weaning, and psychological treatment, Cooper desperately needs to get back on track, and look towards a tube free future. You will give our son the gift of a more comfortable, safe, independent and normal life, with substantially less doctor, specialist and hospital visits.
For a detailed account of Cooper’s birth, the Rapid Feeding Tube Wean in September with Dr Wilken, and our previous two months in hospital after the PEG surgery, please visit www.facebook.com/helpcoopereat
To Donate to Cooper Greig, please use the form below. Thank you for your generosity.
Sean Crealey and Scott Groves are participating in a non-stop 6 kilometre swim on Sunday the 24th of February at the Centenary Pool, between 7-9am to raise some much needed funds for young Ivy Roger. Ivy is a 7 year old girl who has Cerebral Palsy, and along with her family have overcome m...