“I remember feeling absolutely helpless as a mother; my child was going through so much pain and I could not do anything to relieve it. It was that night the doctors broke the news, not only did he have a severe chest infection but also a hole in his heart – desperate for help, we consulted another paediatrician. This paediatrician diagnosed him with Down Syndrome…for the next two years we played the waiting game”, Saba Khan – mother of Down Syndrome baby Sameer.
This article is part of a series of articles written as a collaboration between The KDSP and FUCHSIA magazine to spread awareness about Down Syndrome. The following article is about Sameer Khan, a child with Down syndrome who is part of KDSP’s Family Network. The article has been written from the perspective and experience of his mother – Saba Khan. Disclaimer: Due to privacy concerns, pseudonyms have been used.
Sameer’s Diagnosis
As a baby, Sameer would fall ill frequently. I vividly remember that one terrible night when breathing became extremely difficult for him. That night, we took him to the hospital and waited desperately while the doctors performed several tests on him. One after another. I remember feeling absolutely helpless as a mother; my child was going through so much pain and I could not do anything to relieve it.
It was that night, the doctors broke the news, not only did he have a severe chest infection but also a hole in his heart. The doctors recommended we put Sameer on antibiotics and wait for him to show signs of betterment. One month after he had prescribed the antibiotics, his condition remained the same.
Desperate for help, we consulted another paediatrician. This paediatrician diagnosed him with Down Syndrome and explained to us that underlying health conditions, such as the heart problem in Sameer, were a common occurrence with Down syndrome.
Finally Working Towards A Solution
For the next two years, we played the waiting game and monitored Sameer’s condition; every six months he had echocardiograms to monitor his heart. This was an extremely difficult time for us, we had consulted many doctors but to no avail. Eventually, we decided to take him to Aga Khan University Hospital (AKUH), despite knowing that the expenses might be too much for us to bear. At Aga Khan University Hospital, we were recommended Karachi Down Syndrome Program (KDSP).
The minute we stepped into KDSP, we were welcomed with kindness and compassion; we had, at last, found a place for our Sameer.
The Karachi Down Syndrome Program’s Support Helped Save A Life
Sameer was immediately enrolled into speech therapy classes under early childhood intervention. In my discussion with the team, I mentioned Sameer’s heart condition. Thanks to KDSP we were able to get an appointment with Dr Babar Hasan at AKUH. After our consultation with Dr Babar Hasan, we were told that Sameer would need surgery within three months. Needless to say to it was a stressful time, but we were supported by KDSP at every step of the way, from assisting us financially to providing us emotional support on the day of the surgery.
Sameer underwent successful surgery for Complete Atrioventricular Canal Defect (CVAC) in December 2020. Since then, he has transformed into a healthier and happier child.
Happy Ending
I cannot express the extent of my gratitude towards KDSP. Their generosity and compassion are unmatched. They helped me overcome all my fears and worries and I will always remember how they helped me care for my son.
More Alike Than Different – Hasan Patel, the Miracle Baby With Down Syndrome
If you or a loved one need to know more about the Karachi Down Syndrome Program, the click here.
