Bringing immense happiness and joy to a little girl and her family – The story of Rayah

Surgeons operating at GOSH
Surgeons operating at GOSH

A hole in her heart

During the early stages of Rayah’s mother’s pregnancy, doctors in Kuwait had detected through sonar the hole in little Rayah’s heart. At first they assumed the hole to be very small but after she was born and was 27 days old they discovered that was not the case. Rayah’s condition was not good; she had breathing difficulties, wasn’t drinking milk and used to vomit continuously after every feed. They immediately took their child to the Kuwait Chest Diseases Hospital, where the initial diagnosis showed it necessary to do cardiac catheterisation. It was during this stage that the father heard about Great Ormond Street Hospital in London and through recommendations from friends decided to take his daughter there for treatment. 

Coming to GOSH

When Rayah arrived at GOSH she was just two and half months old. Her parents met Dr. Shankar Sridharan, a Consultant Fetal and Paediatric Cardiologist who explained her condition in full honesty and transparency. He also explained the entire catheterisation and operation procedures. The doctors at GOSH then conducted a detailed evaluation of her heart problems and breathing difficulties. It was discovered that her left pulmonary artery was small and restrictive. Following cardiac catheterisation by consultant Robert Yates, where a balloon dilation expanded the artery and improved blood flow to the lung, Rayah underwent a unifocalisation procedure (where misdirected blood vessels are rerouted into the pulmonary artery) by Dr Martin Kostolny, Consultant Cardiothoracic Surgeon.

Rayah arrived at GOSH on a Friday and the unifocalisation procedure was conducted on the Monday after. After the operation she stayed on the ward for just five days. Although the duration of Rayah’s stay at GOSH wasn’t very long, the parents spoke highly of Rayah’s treatment and the services provided by the hospital, including the translators who were very patient and cooperative during their stay. They also praised the medical team of nurses and other health specialists mentioning that they were very supportive and always smiling.

“The nurses were very keen to make Rayah feel as comfortable as possible, and treat her with the utmost care.” said Rayah’s faher. “It wasn’t that easy to make such a decision, especially as my daughter is very young and needed the operation to live a normal life. However, Dr Yates’ interest in my daughter’s life reassured and encouraged me to give my approval for the surgery. I believed in the confidence and care of the whole GOSH team in saving Rayah’s life, and their efforts to resolve any health complications she might face in future. I would like to especially thank the translators and nurses for their support and cooperation towards me and my daughter during our stay at GOSH.

“GOSH has become more than a hospital to us. I feel immense gratitude to the nurses and doctors there. I consider GOSH to be the very best – a place where all the medical services are conducted perfectly, and the treatment from the staff couldn’t be any better.” concluded Rayah’s father.

Fixing Rayah's heart 

Dr.  Martin Kostolny said “Rayah was born with a complex heart defect. It is called pulmonary atresia, ventricular septal defect and major aortopulmonary collateral arteries. There were no proper lung arteries identified in her case and blood supply to the lungs was provided via collateral arteries originating from the main body artery. Her surgery consisted of disconnection of these collateral vessels from the main body artery and subsequent connection via a small piece of Goretex tube to the right pumping chamber. This provided controlled blood flow to the lungs and enabled growth of the collateral vessels. She will need another operation to close the hole between the pumping chambers and exchange the tube connecting the lung arteries to the heart. The timing of this will depend on her clinical progress. This is a highly complex operation and our team acquired considerable expertise in treatment of this particular problem.”

The second procedure took place when Rayah was seven months old. Both procedures went well and Rayah’s respiratory symptoms are now improving. Rayah is now just over eight months old, she will regularly visit GOSH to have a general assessment of her health status. In six months Rayah will need to undergo a further surgery to fix the structure of her heart.

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