This is my daughters Ebsteins Story:
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I had a difficult pregnancy, summer is definitely very different carrying than in winter, I put on 20kg could hardly walk and the Gauteng heat was unbearable over December, not to mention the water retention I could not wait to give birth. Eden Kate Reid arrived on the 13th of February at 18:33 via caesarian section looking the splitting image of her 2 year old brother. Those were the only thoughts I had as a few seconds later the paediatrician was doing her apgar test I noticed that the paediatrician had a very worried look on her face, I kept asking from the table what was wrong but no answer, eventually the paed came over and informed me that something was wrong with my baby’s heart they were hearing a heart murmur and they were going to take her for a sonar for further observation, my husband went with the doctors and baby for the sonar they were gone for about 30 minutes which felt like a lifetime before they came back to inform me that Eden was in neonatal ICU and that they had discovered that she had a heart condition known as Ebsteins anomaly a rare heart defect that’s present at birth, the tricuspid valve, the valve between the chambers on the right side of your heart doesn’t work properly. Blood leaks back through the valve making your heart work less efficiently and may lead to enlargement of the heart or heart failure, news that doesn’t instantly sink in once you hear them, all you can make out is “heart failure” those are the only words that stick.
Immediately asking paediatrician and the paediatric cardiologists “Is my baby going to be okay” and their answers “we don’t know” you can imagine the panic I went through immediately going into uncontrollable shaking from shock and the after effects of the spinal block.. I then asked “Is she going to die?” with which they responded “we don’t know” I immediately chose to ignore what they were saying as they clearly weren’t going to give me the answers I wanted. I asked to be wheeled through to my baby who was picture perfect, feeding and oxygen tubes in her nose but she was gorgeous, perfect colour skin and looking up at me with her pretty little eyes. I’m not sure how I got through the first night without worrying to death but we did. In the morning it seemed things had changed drastically the doctors informed me that the leaking valve was not leaking as much anymore and the heart murmur sounded dramatically better than it had the night before I could now listen to what the doctors had to say. They were going to leave her in neonatal for approximately 10 days to monitor her and see how she was going to cope with feeding and then slowly let her off the oxygen and see if she could cope on her own. Sitting in the birthing ward surrounded with moms and their babies and you are in your bed recovering alone is very depressing but the continuos flow of good news kept me going.
The next few days were more and more promising she took to breastfeeding well and by day 5 they removed the oxygen she also coped extremely well and we were released from neonatal 7 days later.
Eden’s heart will be monitored for the rest of her life and only time will tell how she copes with her condition and the steps we will need to take in the future, heart surgery might be on the cards for the future to help repair the valves but until then she will be visiting the cardiologist on a regular basis. The main precautions for now is to ensure that she does not get any chest infections which might put unnecessary workload on her heart which can be prevented by a special vaccine Synagis which helps boost her immune system to fight such infections should she pick anything up especially during winter. Other restrictions include no competitive sports and pregnancy in the future can also put strain on her heart. I am hopeful that by then medicine will have evolved so that they will have a complete fix for my little girl and that she will grow up happy and healthy.
We are happy to have her home and healthy.