Just thought I should just put this down on a public forum as this may save another baby’s life since this is such a rare condition. we were pretty clueless on what to do when we 1st found out about the pregnancy complications at 21 weeks and there were too much time wasted in the process.
So during the detailed fetal scan at 21 weeks, we found out that baby J had pocket of fluid found in her heart, lungs and abdominal area and her heart rate was lower at 90bpm. She was diagnosed with a condition call hydrops and the prognosis was poor (maybe 20% chance of survivor?). Our gynae from a private clinic (who delivered our 1st child) sent us for amniocentesis test and a microarray genetic test that took 2 weeks and cost us 4K. While we were waiting for the test results, we were also referred to heart specialist. Her heart rate remained at 90bpm but he couldn’t determine what was the reason for the slower heart rate as her heart functions were fine and he left it to our gynae to advised on whether more test are needed to determine the cause. After a long wait that felt like forever, the genetic test came back and with no abnormalities. We were stuck and our gynae had no other solutions for us and ask us to decide if we wanted to terminate the pregnancy.
We were devastated but we couldn’t give up without knowing the cause of the problem hence we went to seek help from KKH hoping they would have a solution for us. And we were right, the gynae immediately ordered for more blood test and fetal scans as they suspect that baby might have a heartblock condition caused by maternal antibodies which has crossed placenta. And true enough the results came back and I was anti-ro and anti-la positive and that explains my baby’s condition and by then baby’s heart rate has dropped to the 50-60sbpm range. We were immediately put on steroids (dexamethasone) to prevent the condition from deteriorating. Baby J’s condition remained and did not deteriorate while we were on the dexa treatment but it was too late to reverse her condition. We were told there’s a 90% chance that she will need a pacemaker after she’s born. We were monitored very closely and were scanned 2x a week. At week 32, baby J stopped growing and we had to deliver her via C-section and was put on a temporary pacemaker the next day. She would only be ready for a permanent pacemaker when she hits 3kg mark. So she remained in nicu and was transferred to special care nursery subsequently and we were happy to see her daily progress. However, at 1.5 month mark, her condition reversed for the worse. One of her heart valve snapped and her organs started failing. She was put on maximum care and surgery wasn’t an option due to her size and her poor condition. We could only watch her fade away and she left us exactly on the 2 month marked.
Why are we sharing this? Because, we hope that if you are looking for answers, you might want to consider going to a public hospital for an answer. They have all the specialist there and will refer you to the correct departments to get an answer for you. Could we have reversed her condition if we went kkh earlier before her condition deteriorate? Maybe yes maybe no. We don’t know. But it would definitely have reduced the 2 weeks of unnecessary waiting stress!
While every condition is different, I hope this can help someone along the way we may feel as helpless as we were then.
Don’t worry about us. our hearts are broken, but we will be strong and move on. We believe that baby J’s was here for a purpose and we are glad that we were given 2 months to be with her.
So during the detailed fetal scan at 21 weeks, we found out that baby J had pocket of fluid found in her heart, lungs and abdominal area and her heart rate was lower at 90bpm. She was diagnosed with a condition call hydrops and the prognosis was poor (maybe 20% chance of survivor?). Our gynae from a private clinic (who delivered our 1st child) sent us for amniocentesis test and a microarray genetic test that took 2 weeks and cost us 4K. While we were waiting for the test results, we were also referred to heart specialist. Her heart rate remained at 90bpm but he couldn’t determine what was the reason for the slower heart rate as her heart functions were fine and he left it to our gynae to advised on whether more test are needed to determine the cause. After a long wait that felt like forever, the genetic test came back and with no abnormalities. We were stuck and our gynae had no other solutions for us and ask us to decide if we wanted to terminate the pregnancy.
We were devastated but we couldn’t give up without knowing the cause of the problem hence we went to seek help from KKH hoping they would have a solution for us. And we were right, the gynae immediately ordered for more blood test and fetal scans as they suspect that baby might have a heartblock condition caused by maternal antibodies which has crossed placenta. And true enough the results came back and I was anti-ro and anti-la positive and that explains my baby’s condition and by then baby’s heart rate has dropped to the 50-60sbpm range. We were immediately put on steroids (dexamethasone) to prevent the condition from deteriorating. Baby J’s condition remained and did not deteriorate while we were on the dexa treatment but it was too late to reverse her condition. We were told there’s a 90% chance that she will need a pacemaker after she’s born. We were monitored very closely and were scanned 2x a week. At week 32, baby J stopped growing and we had to deliver her via C-section and was put on a temporary pacemaker the next day. She would only be ready for a permanent pacemaker when she hits 3kg mark. So she remained in nicu and was transferred to special care nursery subsequently and we were happy to see her daily progress. However, at 1.5 month mark, her condition reversed for the worse. One of her heart valve snapped and her organs started failing. She was put on maximum care and surgery wasn’t an option due to her size and her poor condition. We could only watch her fade away and she left us exactly on the 2 month marked.
Why are we sharing this? Because, we hope that if you are looking for answers, you might want to consider going to a public hospital for an answer. They have all the specialist there and will refer you to the correct departments to get an answer for you. Could we have reversed her condition if we went kkh earlier before her condition deteriorate? Maybe yes maybe no. We don’t know. But it would definitely have reduced the 2 weeks of unnecessary waiting stress!
While every condition is different, I hope this can help someone along the way we may feel as helpless as we were then.
Don’t worry about us. our hearts are broken, but we will be strong and move on. We believe that baby J’s was here for a purpose and we are glad that we were given 2 months to be with her.
. May I know which gynae at KKH initially helped you and led the investigation for this complication? Thank you.