TTTS: Week 23 to Week 25 - To Ipoh for Laser Surgery (pre and post)

So we saw Prof B at the FCC again at week 23 to confirm our options. I had to do something, even if it is going to cost a bomb, I will do it.

However, do note that the laser treatment centre at Ipoh, Perak (i.e Hospital Raja Permaisuri Bainun) is a government hospital. Do not expect a private hospital service and ambience but rest assured that the doctors and nurses are as capable as the ones in Singapore, even more since they are able to take very good care of me and the babies. Cost wise: around RM2,000 including one night in a high dependency ward and a night in the normal ward (no air con), laser surgery plus medication, food and constant care from the doctors involved and extremely friendly nurses. There is a direct flight from Singapore to Ipoh via Firefly daily.

If you would like to travel further because you have the money to do so, the next nearest treatment centre is in Hong Kong or Australia - but be prepared to pay so much more and the percentage of both babies surviving is almost the same as if it was done in Ipoh.

This picture was taken on 12th May 2013, a day before I was warded in for the laser surgery. We had dinner at Regalodge Hotel where my parents and Hambril stayed while I am in hospital. It was Mother's Day, so they actually gave both me and my mom complimentary beverages to go with our dinner.

Regalodge Hotel is located right behind the maternity ward around 300m away, hence, very convenient for all of us, especially since Hambril and my parents had to go back and forth as hospital visiting hours are from 12pm to 2pm and later in the afternoon from 4 to 5.30pm. I cheated a little, my parents and Hambril brought in outside food during visiting hours because I craved for so many things after the surgery.

Laser surgery to cut off the connecting vessels from the donor and recipient twins was done on 13th May, very early in the morning at around 8.30am and lasted less than an hour as I had no major complications. I saw Hambril briefly before the surgery, did not get to meet my parents though as everything happened too quickly. Dr Japaraj had wanted the laser surgery to be done on the twins as soon as possible. During the surgery, I was surrounded by nurses and doctors who all encouraged me to say my prayers, the nurses even said prayers together with me just to make me feel relaxed. I donned the op robe with warmers all over me - the surgery room was really chilly. I was on local anesthetic and my heart was beating abnormally but as the surgery moved forward, I became more at ease while the nurses taking care of me all shared stories with me in order to alleviate my thoughts. My babies' saviour: Dr Japaraj, a MFM specialist, is very calm and thorough throughout the whole process - we can never thank him enough for everything he had done for the babies. Dr Japaraj has done many laser surgeries related to TTTS - he is well known in Asia and is recommended by Prof B, hence, rest assured that you will be in good hands (see also http://www.japaraj.com/ for more info on TTTS).

Lunch after surgery - My stomach and legs were still swelling, but I felt lighter and I can finally sit up. Minor contractions and heart palpitations did occur occasionally though after the surgery, but the best thing is, in the operation theatre, I actually saw my babies' faces through the scope - both were telling me that everything will be ok with their hand gestures. I thank Allah every day for the successful surgery and for rewarding me with the most beautiful gift ever, my baby boys. It is still quite a long way to go after the surgery - with more ailments cropping up every week or so but I am confident that everything will be all right in the end.

Bye bye Ipoh - thank you for the great hospitality, look at my bloated stomach!! Walking to the airplane was quite a feat, but nonetheless, I made it without a wheelchair. By week 28, my stomach had actually subsided to 2/3 of that size as the babies' fluid levels are more or less equalized.

Post surgery - in pain, but less pain, and happy faces because breakfast at Regalodge Hotel was awesome!!!

By week 25, we were already back in Singapore, I was on bed rest most of the time because I still had heart palpitations now and then though my contractions had subsided. My feet were still swelling and my stomach now has battle scars all over (tiger stripes and stitches at the corner). We met Prof B on week 25 for more follow ups - and that is when he proposed that we should consider going for subsidized treatments at NUH instead of Gleneagles.

With twins, and a high-risk pregnancy, we could not agree more with Prof B, so we made a very tough decision to change our obgyn and hence, our weekly affair at NUH from then onwards.

I want to thank everyone, my family and my friends and colleagues for their support during these trying weeks, firstly, my doctor at Gleneagles, Dr Ang, who had been taking care of me since day one, Prof Biswas and his team of sonographers and nurses at NUH who had been nothing but kind to us with their constant care and concern, Dr Japaraj and his team of Medical Officers and the nurses at Hospital Raja Permaisuri Bainun for their great hospitality, my family for being there for me, especially my parents for sacrificing so much for me and the babies, my brother and sister who had been taking care of me during my HL, my aunts, uncles and cousins who had kept me and the babies in their prayers always and for sending us off at the airport, my in laws for their prayers and constant support, my childhood friends Kak Fiza and Kak Lalin together with their families for visiting me and making me laugh during one of the most difficult times in my life and last but not least, to my dearest husband, Hambril, for everything he has done, still doing and sacrificed, still sacrificing. Love you Bee!

                                                                             <3

TTTS: Week 22 - How we knew

My next appointment was at NUH Fetal Care Centre - Private patients are usual referred to NUH FCC for detailed Growth, AFI and Doppler scans - at 3 stages of the pregnancy, somewhere between the 13th, 20th and 32nd gestation weeks.

So week 22 was my appointment with the sonographer at NUH FCC. We waited for nearly an hour, the centre was packed and as usual, both me and Hambril were pretty excited to see our babies on the screen. However, I was not feeling that good that day, something I read recently online had made me anxious. Especially since my legs are getting worst and my stomach really looked like it was going to burst anytime soon. At 22 weeks, I really looked like I had been 9 months pregnant - not a good sign at all.

My worst nightmare came true that day. At first, the sonographer jokingly said that the left baby was "naughty" because Baby R would not let her see his bladder. Then she kept quiet and went through to measure the usual AFI and Doppler readings. I could not understand the figures on the screen. I saw my 2 babies though, Baby R seemed to be stuck on the uterine wall with little movement and Baby Q was practically floating in a large pool of water. Both babies were not moving so much - they might have been distressed that day.

The sonographer then quietly excused herself to call on a senior consultant, Prof B, or in my case, one of our babies' saviour because if it was not for Prof B, we would not have known about the disease that had plagued our babies and what to do about it.

So Prof B went on to screen the babies thoroughly that day, and we heard him telling the sonographer something about "TTTS". My heart nearly stopped and Hambril quickly squeezed my hand. I could not believe it. TTTS and I am 1 of the 15-20% who has to go through this dreaded disease. My 1st thought was "Why me?".

"Nur Hidayah - it seems like there is some kind of TTTS detected via the ultrasound. Looks like it is TTTS Stage 2, which means that the left fetus is not producing urine and we could not see his bladder. The MVP of the left fetus is less than 2cm - you need to consider the following options if you want to save both fetus: 1. Go for amnioreduction - which does not eliminate the TTTS problem and the percentage of both fetuses surviving is low or 2. You need to go for laser procedure - this procedure is more viable for your case, the laser will cut off all connecting blood vessels from the donor to the recipient, however, you will need to go to Ipoh, Perak to do the surgery as there are no known specialists in Singapore that can do the laser procedure".

I could not control my emotions, tears just start falling, I was not even listening properly to what Prof B had said. All I know is, I want to go Ipoh as soon as possible because I want both my boys to survive TTTS. 

So Prof B advised us to see him in a few days to consider the options he had proposed - there were actually 4, but I would not want to mention the other 2 because there is no way I am going to give up after having gone through 22 weeks of pregnancy.

I could not stop crying, I want to run to the toilet so badly to be alone and cry myself out. I also needed a little bit of alone time to digest everything.

The centre was empty when we went out of the consultation room and I have never felt so alone before in my life. 

The dreaded disease: Twin-to-twin Transfusion Syndrome

I am writing this post with a heavy heart and I have been contemplating to share my experience because TTTS is a wicked disease and it has indeed changed our lives from week 22 onwards.

What is TTTS you asked?

Twin to Twin Transfusion Syndrome (TTTS) is a disease of the placenta (or afterbirth) that affects identical twin pregnancies. It is a random disease, has got nothing to do with what the parents did or did not do and it can happen to anyone. See http://www.tttsfoundation.org/ for more information on TTTS.

That is why TTTS is wicked, prior to being diagnosed with TTTS Stage II at 22 weeks gestation, our twin boys had been growing healthily.

My husband and I were pretty excited to see our obgyn at Gleneagles following our Europe trip. Yup, I travelled for nearly 12 days to Paris and London, walked and shopped like I was not even carrying twins. The 12 days we spent in London and Paris were the best experience ever, especially since in a couple of months time, we will be busy with our twin boys.

On that appointment day at Gleneagles early May, I was already suffering from breathlessness, my legs felt too heavy and sore, and my stomach seemed to be growing at an alarming rate. My weight increased from the consistent 2kg to nearly 5kg since my last appointment with the obgyn. Being 1st time parents, we were unaware that there might be something wrong as throughout my pregnancy thus far, I have people telling me that I do not look like I am carrying twins. I also have people telling me that my babies might not have enough nutrients hence my stomach looked small. Of course, I ignored their comments - but I was quite glad that my stomach actually showed by week 21.

However, little did I, or the others know that TTTS has silently crept up inside me. By week 21, I weighed nearly 74kg and my legs were so puffed up, I looked almost like a penguin. The obgyn did not detect any TTTS when we saw her that day, so I carried on working, even going all the way to Tuas to do an audit albeit feeling really unwell that week.

**Note to 1st time mothers-to-be, please ignore what others think, go with your guts, if you feel breathless and your legs and stomach are swelling at an alarming rate, please see your obgyn immediately for further diagnosis. If you are carrying multiples, do note that your pregnancy is usually considered as high risk, hence, even the slightest change should be reported to your obgyn or MFM (Maternal-Fetal Medicine) specialist immediately.

More on the dreaded disease in my next post.. Feeling kind of emotional already from typing this post..

1st Trimester - Finding out that we are having twins

16 Jan 2013 - The happiest day of my life because I found out that I had been 7 weeks pregnant! Our obgyn had cautioned us that the embryo is still developing. Nevertheless, it was great news and we had to tell everyone we knew that I was pregnant.

My 1st trimester - The 1st trimester had been wonderful - no morning sickness and throughout the 3 months I was pregnant, I had been out and about doing the usual; meeting clients for audit, staying out late in the office, eating and drinking anything and everything I wanted and basically basking in all the pregnancy goodness including getting my husband's attention all the time.

The only setback was that one particular back pain which was so intense that we thought it was appendicitis. Hambril drove me to Gleneagles' A&E clinic after attending one of my cousin's wedding, and because our obgyn is from Gleneagles. We should have gone to KKH or NUH instead - we panicked and I was crying from all the pain, I thought my ribs broke or something.

The worst thoughts came into my mind that day. The GS we saw at the A&E assured us that it was not appendicitis and so the next day, we made an urgent appointment to see my obgyn to determine the cause of the back pain. Nothing seemed amiss except for that nagging pain which did not seem to go away.

On 25 Feb this year, another surprise awaited us as we went into the obgyn's clinic. Everything was as per normal, I still have intense back pain and am only subscribed to eat paracetamol as "I was pregnant".

I described the pain to my obgyn and she did an ultrasound scan to determine the cause as all other scans such as MRI, X-ray and what nots were not safe for pregnant women.

The examination room was quiet as all 3 of us were concentrating on the screen of the ultrasound scan machine when suddenly my obgyn exclaimed, "Oh my! How can I miss this!". Of course both Hambril and I were shocked, we thought there was something wrong with our baby. "Hidayah, Hambril, CONGRATS YOU ARE HAVING TWINS!".

Twins!! What are the odds!

I could not sleep that night because of all the what-ifs and till today, the what-ifs still haunt me like that nagging back pain I felt almost 3 months ago.

Log Book - Our 1st Surprise!

Hello world! Welcome to my pregnancy journey - yup, I am currently pregnant with twins and it has been a whirlwind of adventures so far.

Let me start off by reminiscing on the day I knew I was pregnant.

26th Dec 2012 - I remembered the last time I had my period was during one of my best friend's wedding on 24th Nov that year. I felt something was not right after a gathering at a friend's house the night before on 25th Dec - so I asked my husband, Hambril to buy for me a test kit in order to confirm my suspicion.

Little did I know what God had in store for me in the next 9 months when I found out I was pregnant.

We tested twice (I am of course paranoid so I bought another test kit just to be sure) and both kits came out positive! So, being really excited, we arranged to meet our obgyn on 16 Jan to confirm our mini lab findings!