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Zaria Grace: Our Graceful Warrior

Our rainbow baby: conceived naturally after a the storm of a miscarriage, Zaria Grace was born on 24 October 2017. After almost losing her due to a threatened miscarriage from week 6 to week 8 of her fetal development, she really was and remains our saving Grace; the treasure pot at the end of a rainbow.

We knew something was wrong when she was put into an incubator and was very blue after entering the world. Her paediatrician informed us that she had swallowed some amniotic fluid which causing irregularly breathing, and which saw Zaria taken to Neonatal Intensive Care Unit (NICU) for observation.

The first time I saw my baby girl, I broke down. There was a breathing machine that helped her to breathe and alongside it, a heart rate monitor. Our newborn little girl didn’t look healthy. She was kept in NICU for 6 days. After having endured a lung infection, yellow jaundice and breathing difficulties, her paediatrician contacted paediatric cardiologist, Dr Greenwood Sinyangwe to run an examination on her heart.

On day 6 of her life, Zaria was diagnosed with Total Anomalous Pulmonary Venous Drainage (TAPVD). An incredibly rare heart defect in which oxygen-rich blood does not return from the lungs to the left atrium from where it is then pumped to the body. Instead, the oxygen-rich blood returns to the right side of the heart. Here, oxygen-rich blood mixes with oxygen-poor blood and returns to the lungs. We were immediately transferred to Netcare Sunninghill Hospital and told that the only options for our precious baby girl’s survival would be open heart surgery. Our hearts sank as they filled with sadness and pain.

On 1 November 2017 , at just eight days old, Zaria went into theatre for a six hour long heart surgery; for what felt like an eternity with Dr Hendrick Mamorare - the longest and most difficult time for our family. We didn’t know what would happen understanding there was a 50/50 chance of survival. During this time, we prayed and asked God to be with our warrior.

Her condition affects 1 in 20 000 children and our baby had survived the surgery. We were so grateful to see her come out of theater, although it’s the most unbearable image to recall, she was alive and breathing.

Zaria’s 54 day stay in Cardiothoracic Intensive Care Unit (CTICU) at Netcare Sunninghill Hospital saw her become known as Baby Grace by the CTICU staff. We went through so many stages of pain and healing in those 2 months, with the support of family and our hospital family (the family of other heart patients), which kept us strong and kept us fighting for our little girl. Certain people cross your path for a reason and our heart family have rooted themselves very deeply in our hearts.

Following on from CTICU, our little girl was taken to NICU for three days, as she was coping so well and finally took a breath on her own 55 days after taking her first breath at birth.

In total Zaria spent 57 days in hospital. She was supposed to be sent home with an oxygen machine and overcame that; she was supposed to have had a minor surgery to insert a feeding tube into the stomach and overcame that too… It is only by the grace of God and the support our family received that we have been blessed and humbled with our precious miracle.

We count our blessings every day. We are deeply grateful that we have our girls Zivah and Zaria, and it’s so beautiful that we have been given this chance of life to have our healthy baby home and to see how she is growing up and has her big sister as her best friend.

Although Zaria takes medication to regulate the beating of heart, she is the happiest and cutest little heart warrior.

Zaria (derived from Azaria ) means "Helped by God”. We prayed for her before she was born and prayed for her through this ordeal and God has helped all the way. Our faith kept and continues to keep us going.

A message to families going through something similar or through a challenging time. God gives his hardest battles to His strongest soldiers. Faith is being sure of what you hope for and certain of what you don’t see. You can follow Zaria's journey by liking the Facebook page her family set-up for her.


© Maboneng Heart and Lung Institute 2018 | Images: Magda Griesel


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