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Maryam's Tale of Bravery


Born in Vereeniging on the 1st September 2017, Maryam’s entry into the world was nothing short of a miracle. Prior to her birth, Maryam was almost lost sixteen weeks into her fetal development. The graceful little warrior then took on the challenge of coming into the world not breathing, and had to be resuscitated at birth. The heart murmur nestled in the chest of the Dakhil family’s newborn baby girl was missed at birth and only picked up one week later, on a check-up visit to her paediatric cardiologist. She was diagnosed with coarctation of the aorta (CoA). Time stood still for an eternity. The heart murmur sent her family to Johannesburg, where they were consulted by Dr Greenwood Sinyangwe, one of Maboneng Heart and Lung Institute’s paediatric cardiologists. “At this point, Maryam was already 9 weeks old and had miraculously survived with her coarctation (CoA) which is usually rectified at birth,” explains Maryam’s mom, Sajeeda, “her [blood] pressure was high and her left valve was leaking”. Considered a congenital heart defect (CHD) requiring immediate attention, CoA sees a narrowing of the aorta resulting in blocked or limited flow of blood to the body, which often backs up flow in the left ventricle of the heart, as well as high and low blood pressure in the head and lower body, respectively (CDC, 2016). Maryam’s case was immediately referred to cardiothoracic surgeons, “the gifted” Dr Hendrick Mamorare and Dr Viljee Jonker. “Handing her over to the ICU nurses was one of the most difficult things to do,” expresses Sajeeda, “but the nurses and doctors, especially Dr Jonker, were so reassuring… we were put at ease some what.” Maryam was in theatre for three hours, during which her family spent most of the time in prayer. “It was excruciating,” shares Sajeeda, “my family remained by my side throughout; my husband, Jassem was my pillar of strength. I kept my mind occupied during those three hours to prevent me from total emotional melt down.” The Dakhil family were kept regularly updated by the doctors throughout the surgery which was “fantastic… knowing it was going well gave us hope.” While Maryam successfully underwent her op and held onto her life in ICU, Sajeeda’s legs and feet began to swell for extended periods of time. Her little girl’s cardiologist suggested she go for a check-up, which is when she was diagnosed as having developed cardiomyopathy and was in heart failure. “I was put on treatment immediately to get my heart muscles pumping again,” explains Sajeeda, who was extremely weak and struggled to complete everyday chores, like walking. Sajeeda refused to be admitted to hospital, viewing her role in her daughter’s struggle as of “utmost importance… being on call 24-hours of every day”. “I refused,” shares a dedicated Sajeeda, “I could not bear the thought of not seeing my baby.” The process of attaining health, of both mother and daughter, was an incredibly “terrible ordeal” for Sajeeda and her family. Sajeeda held onto the hope offered by the Quran: “Oh Lord I am in desperate need of whatever good you send down to me' (Quran: 28:24) and by expressing immense gratitude for waking up every day and for every day they were able to visit Maryam in ICU. “This gave me the strength to believe that all would be well,” shares a Sajeeda - her words filled with gratitude.

Maryam was discharged after ten days in ICU. The ICU experience was incredibly distressing for Sajeeda - “she was swollen and had tubes sticking out of her. [Maryam] had not fed in 48-hours [for surgical reasons] and was sedated but would cry to be carried and cuddled when awake.” As Maryam’s health improved, Sajeeda’s health had deteriorated and by the time Maryam was discharged, Sajeeda was unable to carry her critically ill baby - the heartbreak palpable as the mother of two shares: “that for me was the most traumatic time ever.” “I would not have been where I am today without my husband and family and my unwavering belief and trust in God and the knowledge that he would not put me through something that I was not able to handle.” Sajeeda goes on to express a deeply held appreciation for the silent support and positivity offered by the “dedicated” team of medical staff at Netcare Sunninghill Hospital. “Maryam is my little miracle, a true to heart survivor,” declares Sajeeda, as she smiles and explains that no pun was intended. “She is the epitome of the gift that God has bestowed on all of mankind - the gift of life. She reminds me of the fragility of life; that family is very important and that respect for each other is essential in any relationship.” Sajeeda is on the road to recovery and her graceful little warrior is doing “very well”. “Being able to cuddle with my two girls makes life such a joy for me… I would not waver to do it again if need be. Maryam is indeed a little survivor who, at her tender age, has show great tenacity. We feel truly blessed to have her in our lives.” For the families and individuals walking along a similar path, Sajeeda shares with you: “In order to traverse any difficulty, faith and hope in God’s mercy is paramount. It is most harrowing to see your child ill… things seem dire, but hold onto the hope that things will get better. The team at [Netcare Sunninghill Hospital] go the extra mile to make you, as a parent, feel reassured.”

 

© Maboneng Heart and Lung Institute 2017 | Images: Sajeeda Ally

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