Experts offer Abdullah Al Shukry a second chance at life
GOSH - more than a hospital
For Abdullaziz Al Shukry, Great Ormond Street Hospital (GOSH) is more than a hospital. It is the place that offered his son, Abdullah, a second chance at life. “There are no words to explain how I feel and how much I appreciate everything. This is my hospital, I feel at home here. I love this hospital” Abdullah says in fond memory of GOSH. For Abdullaziz and his wife who now care for Abdullah full-time, GOSH offered them an answer to what was wrong with their son, something that had escaped doctors back in Kuwait, and the chance for them to care and support him. ‘Until I came to Great Ormond Street Hospital, I was so worried. We didn’t know what was wrong with Abduallah,” Abdullaziz explains. “Now finally, finally after everything he’s been through, he’s smiling, he’s happy.”
A second chance at life
The mystery began when Abdullah was born. He began vomiting and would not breast feed and was transferred almost immediately to an ICU in Kuwait and stayed there for four months before being moved to GOSH. “They could not tell us what was wrong in Kuwait and we were so worried – we wanted to make sure our son had the best treatment,” Abdullaziz states. “One of the doctors said that it was due to a lack of oxygen. Another said it was liquids on the brain and he would get better while one doctor said he would not live another 6 months.” Once at GOSH Abdullah was seen by Dr Sophia Varadkar, an expert neurologist, who diagnosed Abdullah with a rare condition known as molybdenum cofactor deficiency. The condition is caused by the absence of molybdenum cofactor which leads to an accumulation of toxic levels of sulphite and neurological damage. Abdullaziz remarks how grateful the family was to know what was wrong so that they could begin to care for him properly: “Previously I was worried about him, now we know what is wrong, I am happier. We were lucky to have amazing doctors treating our son. They treated him like their own child - they took amazing care of him.”
Healing a heart
Abdullah also presented with a series of complications including a hypertrophic cardiomyopathy, which is a condition where the heart muscle overgrows and causes problems in the outflow of blood from the left sided pumping chamber. Abdullah was referred to the expert care of Dr Alessandro Giardini, a paediatric cardiologist at GOSH specialising in the care of children with congenital heart disease and hypertrophic cardiomyopathy. “Abdullah had hypertrophic cardiomyopathy which was causing his heart muscle to bugle, causing a narrowing on the way out of the left side of the heart. The condition meant he was very vulnerable to even small infections. If he had caught an infection it would have put his heart under a great strain that could have potentially caused him to suddenly die.” Dr Giardini explains. “This condition is very common in adults and although rarer in children it is not unheard of. We need to raise the awareness of this condition for the public, as it can result in sudden death. It causes chest pain, shortness of breath, palpitations and sometimes sudden death, but it can be treated and managed.”
“I had been managing Abdullah’s hypertrophic cardiomyopathy with medications for a number of years,” Dr Giardini explains, “Unfortunately, the situation evolved to the point where the medications were not sufficient anymore.” Dr Giardini was able to offer Abdullah an operation called a myectomy whereby some of the excess muscle of the heart is carved out and removed to allow space for the blood to come out of the left side of the heart. “As expected,” Dr Giardini says, “Abdullah’s recovery was long, but he has made very good progress and is much better than before the operation.”
Abdullaziz explains his gratitude for the care his son received from Dr Giardini, “without him I wouldn’t be happy, and my son wouldn’t be alive. He did everything possible to help my son and without him, my son wouldn’t be smiling today.” Whilst Abdullah will still have complications associated with molybdenum cofactor deficiency, he has recovered well from the operation. “He is still in the ICU but we are solving the problems now.” Abdullaziz says. The future for Abdullah looks positive, with a loving family dedicated to providing full-time care for him, he is achieving things that his family weren’t sure were possible when he was first diagnosed. “We never expected him to be able to react to us because he has bilateral brain damage but he reacts to us: he knows exactly who he is talking to.” Abdullaziz and his wife have taken great care in following expert advice to treat Abdullah as a normal boy. “I believe part of reason behind his progression is because of the care we give him and the fact we treat him like a normal boy. I take him everywhere,” Abdullaziz says proudly, “I take him swimming – he does everything. I am willing to do everything for him, he’s just amazing.”
Dr Giardini trained in Italy and has a PhD in the pathophysiology of heart failure in patients with congenital heart disease. He completed specialist training at the University of Bologna and the University of California, San Francisco and has published over 120 articles in peer reviewed articles.
All about GOSH
The cardiology department at GOSH is one of the world’s largest paediatric cardiovascular and respiratory centres. Their mission is to improve the quality of life for children with heart and lung disease. The department offers the expertise and equipment to diagnose and treat conditions such as hypertrophic cardiomyopathy. They offer a multidisciplinary approach and have support services in the catheter laboratory, cardiac imagining service, sleep function service, cystic fibrosis unit and lung function service as well as having a specialised cardiac intensive care ward.