A father’s plea leads to worldwide support
Four-year-old Khushbakht of Pakistan underwent her first successful bladder exstrophy repair and pelvic osteotomy in Doha, Qatar. Her journey to effective treatment was prompted by a heartfelt plea from her father to A-BE-C, which lead to worldwide support.
“We are so thankful to A-BE-C for all the support you have given our family. From the day you considered my request, there was a ray of hope in our lives that we will see our daughter healthy and fit like other children.” — Qaisar and Temheed, Khoshbakht’s father and mother
Qaisar Kalam, the father of a little year girl named Khushbakht, from Northwest Pakistan, will never forget the moment shortly after his second daughter’s birth when the doctor told him about her very severe congenital condition. She was born with bladder exstrophy.
As a father, Qaisar’s emotions tormented him. He was joyous for the birth of his daughter but worried and confused about how to care for her. After an initial failed attempt by local doctors to cover her bladder, Khushbakht’s parents soon realized she needed to be treated by very skilled hands, a surgeon experienced to perform such complex surgeries.
Search for treatment and failed surgeries
Qaisar and his family live in a very remote part of Pakistan where healthcare facilities are not equipped to handle rare and complex conditions like bladder exstrophy. During the next two years, Qaisar left his wife and older daughter in their remote village, traveling throughout Pakistan and even to Dubai, United Arab Emirates in search of a doctor who could help them. When Khushbakht was about 2 years old, a doctor in Dubai once again attempted to repair her bladder. When the second surgery failed, the couple was devastated. But Qaisar refused to give up. He took his daughter to several more hospitals. Each time they were told that Khushbakht would need a series of complex surgeries but offered little hope of finding a pediatric urologist in their part of the world with the experience needed to treat her.
A father’s heartfelt plea to A-BE-C
In December of 2014, Qaisar reached out to A-BE-C for help. By this time, Khushbakht’s bladder had been exposed for almost three years and she was now suffering from serious infections and rashes. She was living in constant pain and not even able to sleep at night. “Qaisar pleaded with me to help him find some way to help his little girl,” said Pamela Block, executive director of A-BE-C. “He and his wife worried day and night about her condition, her future and the challenges that lie ahead for her. I receive several similar requests a month, but I could not stop thinking about this little girl’s suffering and her parents anguish. I was determined to figure out a way A-BE-C could help this family on the other side the world give their daughter the treatment and care she needs and deserves.”
A surgeon’s commitment and worldwide coordination
Dr. J.L. Pippi Salle, MD, PhD, FAAP, FRCSC, a world-renowned expert in bladder exstrophy and other complex urological conditions consulted with A-BE-C about Khushbakht’s condition and together they devised a solution. A-BE-C secured funding from the Qatar Foundation’s Chain of Hope to cover all hospital and travel expenses and arranged to bring Khushbakht to Doha, Qatar where Dr. Salle recently took the position of Division Chief of Urology, Department of Surgery at Sidra Medical and Research Center. Dr. Salle generously donated his services.
After months of preparations and paperwork, the family was given permission to travel to Doha for Khushbakht’s big surgery. On August 4, 2015, Dr. Salle, with the support of Dr. Jason Howard, Chief of Pediatric Orthopedics at Sidra Hospital and Dr. Prakash Mandham, Pediatric Urologist at Hamad Hospital, performed a complete exstrophy repair and pelvic osteotomy. Both Dr. Salle and Qaisar kept in close contact with A-BE-C during her surgery and month long hospital stay, sharing updates and photos.
Khushbakht‘s external fixators were removed in September and, other than a few bladder spams, she is healing well and doing fine. But a successful surgery is just the beginning. Qaisar and his family are now adjusting to Khushbakht‘s new life-long catheterization journey and enjoying being together again as a family.