On our second visit to KKH, I was scheduled for routine blood tests and nuchal translucency screening. There’s nothing much to say about the routine blood tests, but I have a lot to say about the nuchal translucency screening. I admit that when I was going for the screening, I wasn’t sure what it was and I was not listening to the nurse properly when she asked me if I wanted to take the test. So whatever I write here is balanced with hindsight and research I did after I had the screening.
So since 2011, most countries offer pregnant women Nuchal Translucency Screening (or NT for short) from Weeks 11-13+6 days. NT screens for Down Syndrome, Edward’s Syndrome and Turner’s syndrome, and other possible congenital defects. NT is usually combined with blood tests, and this combined screening is called OSCAR in Singapore. The combined screening is suppose to be 90% sensitive, while just the NT screening alone is 80% sensitive. During the NT screening, a sonographer uses ultrasound to do a detailed examination of your foetus’ physical structure. Signs of a missing nasal bone and a thickened neck indicate risks for Downs and other congenital defects. OSCAR and NT screening, however, is just a screening and cannot assure 100% that there is indeed a problem with the foetus. There is a 5% false positive and false negative rate; though in many forums, people report higher percentages. After your baby is measured, coupled with your blood tests, they carry out calculations (which includes your maternal age) on your risk. Anything below 1:300 (meaning 1 out of 300 pregnant women) is considered HIGH RISK for abnormalities and congenital problems. When you get such a result, you will be referred to a genetic counsellor to consider getting an amniocentesis. Amniocentesis is an injection into your belly and cervix to collect a sample of amniotic fluid and to test the baby’s chromosomes for abnormalities. However, the amniocentesis can only assure 99.9% for Downs Syndome and Edward’s Syndome and to some extent Turner’s Syndrome. Whatever else is discovered, like a congenital defect, is just a possibility and cannot be guaranteed. If the result is a positive for Downs, Edward’s or Turner’s Syndrome, research has shown that 92% of women in most developed countries decide to terminate their pregnancies.
My experience with the NT screening was more or less negative at KKH. But on hindsight, I realise that this is probably how most hospitals operate and therefore, KKH is not unique in this experience.
I was told that only NT screening was available to me and OSCAR was not. Because I was carrying triplets, the blood tests would not be accurate. Just the NT screening alone was 80% sensitive. I was scanned by a sonographer, with no doctor present before, during and after the scan. I felt because it was triplets, the scan overwhelmed her and indeed, she took a very long time – a total of 2.5 hours. First she scanned the singleton fraternal twin. Then she tried to scan the identical twins and gave up because she said they were not cooperating and asked me to take a 30 min walk. After 30 min I returned, waited for my turn again, and then she called me and asked me to go to another bigger room with an apparently what I think is a better machine. There she took the identical twins’ measurements. During the whole process she kept asking me to turn sideways back and fro (if you are pregnant you know this is is painful to do). She also kept asking me to cough to shake the babies. I ended up going home with a real cough. When she was done, her colleague came in and told her to take a doppler, and she told me to lie back down and scanned me again. I thought it was never going to end, and I could feel myself getting quite ill. When it was all done, she told me calculations had to be done and I had to wait to see the doctor to receive my results.
I waited yet again some more to get my results. If you haven’t noticed, I was tired of waiting. Finally the doctor called me in and told me since its 3 babies, we had to go through them carefully and slowly, which she did not. She rushed through them. She said the identical twins fell within normal range but the singleton was HIGH RISK. Just based on the singleton’s NT measurement of 3.4mm and my maternal age of 31, they put me as 1:26 (4%) risk for abnormalities and recommended that I should see the genetic counsellor to get more information on doing an amniocentesis. I was not so much shocked but sceptical because structurally the baby was fine, and the neck was only slightly thickened. The difference in neck size between the singleton and the identical twins was a mere 0.8mm. My husband was even more sceptical. But being pregnant with triplets makes one hormonal, so I was hormonal and upset. I think on hindsight, I was less upset by the news than of waiting around in KKH and being scanned for 2.5 hours. I asked the doctor and her supervisor (who just walked in) if a re-scan could be carried out, and was given a definitive NO. The calculations would not change, they said. This made me even more sceptical.
We then went to see the genetic counsellor. More waiting. I had enough and told the nurse my husband, daughter and I had been here since 8am and it was now 12pm. I cannot come back after 2pm. We are extremely tired. Thankfully she was very nice about it and tried to find an available genetic counsellor. The genetic counsellor explained to us what was Down’s Syndrome and what is an amniocentesis (not like we didn’t know what it was). I think I felt slightly offended when she pulled out a brochure with a picture of a person with Down’s Syndrome and remarked about how people with Downs had “these” kind of facial features. I was thinking in my head that is someone’s baby you are talking about. At that point, it didn’t really matter to us how our children would turn out. We decided long ago when we wanted to have children that we would accept them no matter what. But a part of me thought maybe it might be good to know to prepare ourselves. That is until she dropped the bomb that the risk of miscarriaging after an amniocentesis was higher for triplets. And that to me was a game-changer. Should I do it or should I not? No one in KKH was able to give me a good reasonable answer. They simply said it was up to you. Gee thanks.
After that I headed to the Private Suite for my routine blood tests. By the time we got home, we were exhausted and I fell ill. I guess from the exhaustion.
The same night I spoke to my friends and I did research and I realised there were many, many things that went wrong today:
– Nuchal scan measurements do vary between sonographers. So getting a second opinion was all right, especially in my situation when the measurements were borderline and an amniocentesis was risky.
– I could also not do the amniocentesis and just wait for further scans to see if there were problems. This was not offered to me as an option. For parents who wanted to terminate the pregnancies, they had till week 20 to decide. That is a long time from Week 13 and between Week 13 and Week 20, there will be at least 1-2 more scans.
– My gynae was not carrying out the amniocentesis but someone else experienced in it. I would have preferred for my gynae to talk to me about my results and to do the amniocentesis. After all, I had chosen her as my primary care-giver. However, this is not how its usually done in KKH, despite being a private patient.
I concluded that I was thoroughly unhappy with the service at KKH. I decided to change caregivers and after much research, decided to go to NUH. I called NUH and asked which doctor they could recommend me, preferably someone experienced in multiples and high risk pregnancy. A few names were given but Prof Biswas was the one name I recognized from my online research. So I asked for an appointment with Prof Biswas and whether I could switch to him from KKH. The nurses were indeed very helpful and tried to get me the earliest appointment as possible and they said I could see him the very next day!
I made an appointment with SGH as a back-up, but the soonest they gave me was the following month. I felt that would be way past my 20th week detailed scan. I was anxious to leave KKH – the hospital was just stressing me out so badly.
The next day we went to NUH and from the beginning to the end, it was very relaxed. For one, the women’s clinic was just next to the fetal care center where all the scanning was done. In KKH, I had to walk to one end of the hospital for the clinic and the other end for the scans and the blood tests. And at each stop, I had to wait. Also at NUH, I barely waited a few minutes after registration and I was already called up for a scan (at KKH i had to wait forever). Prof Biswas was also present at my scanning, he asked about my background and introduced himself to my daughter. I thought that was very sweet of him. The sonographer had went ahead and did a scan of the singleton and while she was scanning the identical twins, Prof Biswas took over. I told them about the NT screen and asked for their advise on whether I should carry out the amniocentesis. This time round, they measured the singleton’s neck at 2.9mm, a reduction from 3.4mm. Prof Biswas acknowledged that it was correct of KKH to prompt of a possible risk, but as far as he could see, there was nothing wrong with the babies structurally. He also added that unless I wanted to confirm a 100% I can go on with the amniocentesis, but as with most multiples pregnancy, the injection would add on to the risk of miscarriaging and pre-term labor. So we decided to just forget about the amniocentesis for now and depend on further scans. I liked that he wasn’t as alarmist. At KKH, they made it sound rather alarming. Besides my husband and I decided it wasn’t important for us to know because we will accept the child for who s/he is. But it helped to hear the words from Prof Biswas about to what extent I should take the risk, rather than being told a clinical “Up to you.”
I also liked that Prof Biswas was there during the scan and could immediately consult me during and after the scan. Whereas in KKH scans and consultations were on different days, which made me feel very disconnected to my primary care giver. He told me from here on, I would come for scans and consultations on the days he is at the fetal care center. Therefore, everything was done in barely an hour. When we were outside waiting to pay for our consultation he also noticed we had been waiting for a long time and ushered his staff to hurry up. Again, I thought that was very sweet of him. My husband agreed with me that things seemed a lot better at NUH. If not for anything, then for my sanity.
I returned home and did more search on Down’s Syndome, amniocentesis and the women who decided to keep or terminate their pregnancies. What I read was heart-breaking. It made me even more convinced to fight for my children, no matter how they turned out.