Hoor's Triumph: Fighting a Rare Disease at GOSH

Hoor, who is now five years old, was a twin born prematurely in Kuwait in 2019, facing numerous health challenges from birth. Hoor was initially deemed unlikely to survive, but she defied the odds. 

Thankfully, after 20 days, doctors informed me that the baby they initially thought had passed away was actually alive. Sadly, her twin who was deemed to be the viable one had an infection and did not make it. Hoor, whom they thought couldn't survive, was alive but very sick.

Ahmed, Hoor's father

Tragically, her twin sibling passed away within the first week of life, while Hoor battled a rare and complex inherited condition affecting multiple organ systems.

At just one year old, Hoor was referred to Great Ormond Street Hospital (GOSH) with a dire prognosis. 

At the time Hoor was referred to us she was very very sick and was in intensive care. She had a tracheostomy, and through that was attached to a ventilator. It was thought that she had an exceptionally low chance of survival which is why she was referred to our centre for help

Dr. Paul Aurora, the lead consultant

"In our first meeting, Dr. Aurora said, 'this is a complex case. I am not sure of the diagnosis; but we will find a way forward. We will tackle each issue one by one.'" - Ahmed, Hoor's father.

Hoor with her Dad, Ahmed

Her treatment involved collaboration among various specialty teams including pulmonology, cardiology, surgery, neurology, and genetics. Each team contributed expertise to diagnose and address the complexities of her condition. A comprehensive treatment plan was devised, which included medical management, surgical interventions, and post-operative care. Under the skilled hands of surgeons such as Mr. Muthialu, Mr. Hewitt, and Professor De Coppi, Hoor underwent multiple surgeries, each aimed at addressing specific aspects of her complex condition.

“She had a rare lung disease which was diagnosed after a biopsy, and she had powerful immunosuppression treatment for that. She required heart surgery. She also required surgery on her stomach in order to protect her breathing. After all of this her condition greatly improved and we were able to move her out of the intensive care unit,” explains Dr. Aurora.

During this time, challenges arose, including severe illness and the unexpected onset of the COVID-19 pandemic.

After multiple attempts, we faced challenges. But we persevered, taking each step meticulously. The initial outcome wasn't as desired, but amidst the hurdles, I held onto hope that it would work out.

Ahmed, Hoor's father

"After completing the above treatments, we were planning to remove her tracheostomy and remove the feeding tube that was in her stomach, but unfortunately the COVID pandemic then started, and it was necessary for Hoor to return to Kuwait with her tracheostomy and feeding tube still in. Hoor then returned to us in late 2022 in order to have both of these removed. This was a complex procedure which required multiple operations and temporary use of non-invasive ventilation using a facemask," said Dr. Aurora.

Hoor before a surgery with Nurse Sansev

Despite setbacks, Hoor's surgeries were largely successful, though some required staged approaches due to their intricacy.

"All of the operations were very successful, though the surgery performed by Mr Hewitt to remove her tracheostomy was highly complex and had to be done in multiple stages," explains Dr Aurora.

Post-surgery, Hoor required extensive aftercare, including close monitoring of her respiratory and nutritional status. Despite setbacks requiring temporary non-invasive ventilation, Hoor made remarkable progress.   Dr Aurora was able to stop the non-invasive mask ventilation a few months after removing the tracheostomy, and eventually Hoor achieved the milestone of breathing independently and feeding orally without assistance. 

Upon her departure from GOSH in 2023, Hoor's health had significantly improved, and she was deemed capable of leading a normal life. It is not necessary for her to come back to London again for further medical reviews as she can be cared for locally.  

Dr Paula Aurora

Since leaving GOSH, Hoor has been making remarkable progress, learning to walk, participating in occupational therapy sessions twice a week, and undergoing speech therapy to enhance her communication skills. She has also started attending nursery, adapting gradually to the learning environment, and making friends.

Beyond therapy, she enjoys outdoor activities like riding her scooter and playing with her seven-year-old brother. Additionally, she expresses her creativity through drawing and colouring.

During their time at GOSH, Hoor's family received invaluable support from the International and Private Care Arabic interpreting team, who ensured effective communication with medical staff and explained medical procedures and care plans. “The Arabic interpreting team, including Wajeeh, Abdusalam, Fadi, and Suhad, made a great and lasting impression on me during our family’s time at GOSH. They were very supportive.

Ahmed, Hoor's Father

Moreover, the communal atmosphere within the Bumblebee Ward allowed Hoor's family to connect with other parents facing similar challenges. These interactions provided a source of comfort, camaraderie, and shared experiences during their time at the hospital. “I’ve made friends with other parents in the Bumblebee Ward, and we used to come together and discuss different matters” said Ahmed.

Reflecting on their journey, Hoor's father expressed gratitude for the support received, including the provision of a free membership to the Nuffield gym as a GOSH patient's father. He acknowledged the challenges they faced, and the dire prognosis given by other medical professionals before coming to GOSH. However, thanks to the efforts of Dr. Aurora and his team, who went above and beyond to provide comprehensive care and address Hoor's complex health issues, she has surpassed expectations and continues to thrive.

"My daughter wasn't expected to survive, and all the doctors we met before coming to GOSH said she wouldn't survive. Her condition was extremely challenging. Thanks to God and then to Dr. Aurora and his team, who did everything possible to keep Hoor with us, help her recover, and address the health issues she has endured," expressed Ahmed.