Living with fear missing out on spending time with her


I found out I was pregnant after I had given up trying because I was told that my tubes are scarred from previous ovarian cyst operations. My son was 10 turning 11 in February. He always wanted a sibbling and wished he had someone to play with. Then I went for my 16 weeks ante natal blood tests, the Dr told me I was high risk for trisomy 18 & trisomy 21. She told me about further tests and the risks involved especially with the amniocentesis. Nevertheless, I prayed and believed that since the results stated that I was 1:20 T18 & 1:51 T21, then it won’t happen to me. I was booked for a C/section but my daughter decided to come naturally 3 days before the C/section date (22 July 2017 and she was rushed to ICU because she was “floppy” (as they put it). She didn’t cry and was blue (cyanosed). Then 3 hours later we were called to ICU to meet the pediatrician. We were told that she has signs of trisomy 18 and they have ran tests to confirm, which later came back positive. She was in ICU for 21 days, I’ve met all sorts of doctors and I’ve been told that she won’t breathe on her own, at birth she had 2 holes in her heart of which one has since closed. She doesn’t have a corpus callosum which never developed. But everything else appeared fine “for now”, as they put it. I was told that if she makes it, she will have a series of complications and between 6 months to 2 years will be the worst time because the previous “cases” barely made it to 2 years.

What I have learnt to this day is that my baby (Lulo) is 10 weeks old and she is not a “case”. She started breathing on her own 5 days before she was discharged from hospital. She feeds from a special feeding cup and suckles from the bottle for short periods. I spent the 21 days when she was in ICU with fear, that when we get home she’ll stop breathing. I watched her all day and night to make sure that I am there when it happened. I realised that I exhausted myself in the process and missed out on getting to know her. She is here with us and my son understands all what has been said. We are giving her the best we can. We are going on holiday this Thursday to create as much memories as we can. It is very hard to hear my son pray every night that “dear Lord please give Lulo strength each day, so she could be healthy and live longer”. We are not looking forward to the day when she will be gone but if it happens we won’t be surprised and we won’t have regrets. Being informed helps us to make the right decisions. We are taking each day as it comes and making the best out of it. I do not want to miss out on spending time with her anymore. All that I’m asking is for her to be given a chance to write her own story. No matter how long or short but I hope others would learn a thing or two from her existence.

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