Twin to Twin Transfusion Syndrome

Third Update – Wise/Williams Twins – 16th November 2013

Posted on by bjwilliams2014

18 Weeks

So all nicely and moved in with Aunty Lorna and getting waited on hand and foot. I feel so useless. I still think I am over doing it in some spots and I get pretty sore in the belly at times and very very exhausted. So glad she has a pool for this weekend! It was really hot yesterday waiting around to go to the hospital.

Rohan was happy to be here as well and did some odd jobs for Aunty Lorna around the paddocks. But at least he wasn’t going insane, and he always timed it so he did the jobs when Aunty Lorna was going out, so she didn’t help. I think he was very sneaky in that aspect.

Well I guess everyone is just telling me to get on with the news and stop stalling, and I will right now for you! Plus it must be a good sign when even your doctor can not even notice the difference between the two anymore and have to go by the cords and were they are attached, but WE HAVE TWO BLADDERS!!! In Twin 1, it has reduced which is great, Prof couldn’t see it when she was scanning for but as she kept on going back to it, it was filling up and she was happy at the size. Twin 2 it was tiny but one was there and all the thoughts of bladders really must have made a difference. (Thanks everyone!)

So they roughly weigh around 200 grams each, which when going shopping afterwards it about a block of chocolate, there is also around 2cm of fluid around them, which means they are both producing fluid. Also their little tiny heart beats and beating at a good 150 to 140 beats per minute, which is great also! So in regards to the babies and their development, we are all happy with that.

Now for the not so good news, Twin 2 dopplers or the blood flow from the placenta to it, aren’t that good at all. Which weren’t good from the start either, and this now something that is going to be monitored each week. When Rohan asked about what happens in regards to this and the outcomes, Prof Jan couldn’t really give us an answer, she shrugged and said, that we may lose Twin 2, we may not. She also said that she has also seen this kind of dopplers and the baby has survived and she has also seen dopplers that are fantastic and the baby has died. So they are no actual answer that can be given for this and she didn’t give us any percentages as well. But if Twin 2 does die, we will still end up with one baby regardless due to the laser surgery has now saved Twin 1 from contracting any of the toxins from Twin 2. You could say that we are fine with this news, there were no tears this time, but from what we can see at the moment, these two are fighters and we (hopefully) will have two babies in the end. We only need to get to 26 weeks with them, for them to be safely delivered, if you can say that.

One thing that did shocked us, was the Prof also said that the Senior sonographer that picked this up from the start in Kalg was also very shocked that the babies were still alive when we got down to Perth for the original scan. This is just proof in the belly, that these two are fighters and want to come into this world together. But we just have to keep our fingers crossed and toes and legs and arms and anything else that can be crossed that every week that we have a scan; we have two little heads, four arms and legs, two strong hearts, two growing bladders, more centimetres of fluid and a lot of movement in between.

So now Rohan has gone back home to Kalg, as the dogs have been a bit of a so and so’s and keeping the neighbours up at night. They must be missing us. Plus to get the backyard in order so he doesn’t have to do it after work. He starts work on Monday and I do as well here in Perth. We are going to miss each other very much so over this time, but just a phone call away.

So that is all from this update, the next scan is on Friday at 4pm so I will do another one again on Saturday after we have processed all the information and collate it all together.

Thank you all again for the thoughts and well wishes!

Lots of Love Bobbi-Jo, Rohan and the Ninjas

Xoxoxoxo

Second Update – Wise/Williams Twins – 12th November 2013

Posted on by bjwilliams2014

aka The Ninja Turtles Jelly and Bean

First of all we would like to thank all of you for your love and support from the first update. We were very overwhelmed with all the words of encouragement and positive thoughts that were coming our way. I am now out of hospital and ready to start the next month here in Perth until we get the OK to come home again. So here is how everything went.

The day of the surgery seems like a bit of daze, it was a very long day but we got to actually talk to Prof Dickinson and she done the scan as well. She is a very lovely lady and was more positive than Doctor was last week. She was also lovely with the babies as well. As soon as the scan doppler was over them, they started to move around and not allow her to take measurements, she started to talk to them and shh them to try and get them to settle down. It was so funny to see, but it didn’t work. It might be a sign for the future I think. The only downfall she had for the surgery was that I was still too early for this to be done but it needed to be done. We were too far advance to leave it any further. The best part of that morning was seeing mum seeing her grandchildren on the big screen and seeing the little heartbeat. It made my day.

So after bloods and a bit of a wait in the waiting room we were off to be admitted to the isolation chamber in Ward 6. (It really was) So after getting ready for the surgery, it was off I go to the theatre room to go get these babies sorted out. I had a lot of people’s faces in my face and a lot of names coming at me, but they were all really nice and calming, which surprisingly I felt that anyway. I was all prepped and on the table, they gave me a sedative that worked but wasn’t strong so I wouldn’t be going into a deep sleep but I wouldn’t feel a thing and it wouldn’t hurt the babies. But I would also hear everything that was going on and could talk to them if I wanted to. All I could feel was a slight tugging on the skin from where the scope went through, until the Doctor got a hold the scope right at the end and was a bit rough, but I think the painkillers were a bit wearing off. Listening to the Prof find all the blood vessels and then say ‘yep’ and then buzz of the laser, it was like ‘that is in me and I can’t feel anything’ I think at one stage I heard her say ‘ohhoo’ and I felt like saying ‘what have you done!’ but I think it was all fine in the end as it was just a branch of a blood vessel. They also drained 500ml of fluid from around Twin 1 to allow for some room for both of them to grow and generate more fluid for themselves. I must have also dozed off because one of the drug doctors told me to start breathing. I was l like ok, I will, I thought I was but I will. The surgery itself went really well apparently, Prof Dickinson could not be happier with it. Plus it only went for an hour and not a couple, so that was a plus side. The best thing was I got to see Twin 1 in the flesh, I got to see its beautiful face, its tiny arms and little belly and legs, and also got to see what we are having. But sorry we aren’t telling.

I think Rohan and mum enjoyed me being back, for the entertainment value and the amount of food I ate after the surgery. 1 mixed sandwiches, someone’s dinner that was discharged, and for the breakfast order, I ordered everything I could on that list. I was so hungry. Who in their right mind would ask a pregnant lady, with twins, to not eat after 6:30am, all day and be fine with it? Plus having my two escorts eating and drinking in front of me wasn’t very nice at all, but it was a laugh and took our mind off things. Rohan and mum also got to see the photos of the little bub and found out what they are also, but they are also not telling. But the photos were for the folder and we were not allowed to have copies of it, but I will keep on asking for them and try and get it so I can show everyone.

The next day, I was surprisingly not sore at all, I didn’t really have a good night in the sleep department, due to hourly obs and having to go to the toilet all the time. But had no pain and we had a scan the next day and it was great for Dad to be there to see them for the first time too. The scan was done by Doctor and he told us that there was now 3cm of fluid around Twin 1 (down from 10cm) and 1.8cm of fluid around Twin 2 (up over a centimetre (YAY!)) He also could see the bladder in Twin 2, was also a plus! He was happy with the results and that I would be having a scan with Prof Dickinson Monday or Tuesday to see how they are progressing then. So that was great news and to celebrate we allowed Rohan and Dad to go to the 4wd show in the city. Mainly to get them out of the hospital and not think about what was going on, for Rohan’s sack. They came back a couple of hours later with big smiles on their faces and really black dirty feet. Mum and I just did a crossword puzzle and had a laugh or two like we always do.

On Sunday we got a surprise and told that we were going to have a scan with Prof Dickinson. Which was good timing really, I was starting to have a bit a pain that didn’t feel like them kicking and a bit constant after I got to go for a walk to the café and back again. The Prof was still really happy with the surgery and once giving the bubs a look over, she couldn’t see the bladder in Twin 2 at all. Plus she doesn’t really know what Doctor saw, so that didn’t help. Going by what she saw that there was still no improvement with Twin 2 (or the little cutie she called it) and the membrane was still up against leg and body. She didn’t do a measurement of the fluid so we are not sure what they were this time around. She also thinks that they may have drained a little bit too much fluid from Twin 1, as they were both tightly up against each other with not much room. You have to be so glad that they are so flexible; it didn’t look comfy in there for Twin 2 at all. Legs straight out flat with the head tucked up against the cord on the chest, I know I would be sore if I stayed like that. So our goal now is for Twin 2 to get more fluid and a bladder. Prof couldn’t really tell me on how I can help that along, but just keep on talking to it and telling it to grow a bladder by Friday when we have our next scan at 3pm.

Due to the pains that I was having, I stayed one more night in the isolation chamber and finally got released to the fresh air and warm sun and stayed the night at Paul’s. Today we are off to Aunty Lorna’s, so that Rohan doesn’t go mad from all the sitting around and end up driving back to Kalg. Plus we know he can help out Aunty Lorna with things and keep him busy. I have now been put on unfit for work until the babies are delivered due to the ‘high risk’, so it is a good thing that I work in an office. Just need to figure out the details of this with work, but that will happen once I am back home in Kalg. Rohan seems to think I have already started with this unfit part due to not being able to lift anything due to having a hole in my belly as well as the placenta, and having to be on bed rest. Oh well there goes the housework!!! Just joking Rohan, I can sweep a floor. :o) ( hehe and cook me dinner – Love Rohan x)

Well, I think that is everything that happened over the weekend, we will give you another update from the scan on Friday and how it all goes. All we ask for this time is to think Bladders and hopefully this little one will hear us and grow one! In the mean time I will continue drinking 2 litres of water a day. :o)

Lots of love and kisses and bladders

Bobbi-Jo, Rohan and the Ninja’s

Xoxoxoxoxo

First Update – Wise/Williams Twins – 3rd November 2013

Posted on by bjwilliams2014

These are the emails we sent to all our family and friends on our journey.

So for everyone that is wondering how the appointment went on Friday or that didn’t know that we were down in Perth, we thought we would write this so everyone know what we know and there is not telling one person this and other something else.

So a bit of background. These twins are more of a freak of nature then genetics, or my eggs are just over achievers and knew we really wanted twins. :o) So the twins are what you call MO/DI, in the medical term Monochorionic or identical twins sharing one choria and placenta. For me it just means they are sharing a placenta and they are also Diamniotic which means they have a membrane between them so they don’t share the fluid that surrounds them and also without this membrane there would have been more complications throughout this birth.

So a couple of weeks ago, no one in Kalgoorlie could find this membrane between the two babies and from that we were told that there is a 5% chance of us having the babies in Kalg as the possibility of them being born to full term (36 -38 week) was not even in the picture, this put us on to the ‘High Risk Pregnancy’ range which to date we still are. We would have probably be put on bed rest at 30 weeks in hospital in Perth, until they are born at either 32 weeks or when ever a complication would of came up. They also would have injected me with something to help develop their lungs to increase their risk of surviving. But after seeing Dr McCullam, he referred me to a senior sonographer that comes from King Edward to Kalg once a month, to see if she could find the membrane. Alas after an hour and a half and two different types of scans, we found one and it was wrapped up against Twin 2 head. She could also tell that we were going to be in for a bumpy ride as from scan, there was not enough fluid around the Twin 2 and a heap of fluid around Twin 1. She also couldn’t find Twin 2’s bladder as it peed just as she was taking the measurements (she called it a little so and so for that – they were cheeky monkeys the whole time) So without the fluid and seeing the bladder she has told us that the babies have developed a complication called Twin to Twin Transfusion Syndrome or TTTS. So she rung her bosses at King Edward and got us an appointment that next week for a scan and a possibility of laser surgery the day after. We were off to Perth!

So what is TTTS – it is a very complex problem that affects around 15% of mono type of twin pregnancies. It can appear at any time throughout and ours is a bit different as it has occurred so early in the pregnancy (around 13 weeks) where it is usually picked up around 16-26 weeks. It means that we have a donor twin (Twin 2) and a recipient twin (Twin 1), where Twin 2 is pumping the blood for itself but for also the other, and while doing that it is using all that energy in that process instead of looking after itself and using that energy to grow itself. It is also trying to create fluid to be around it but due to the lack of growing, it’s bladder is too small to allow it to create the fluid that is needed. Without this blood supply and fluid around the twin 2, it is at a very high risk of dying due to lack of blood or may be born and have a blood transfusion due to being anemia (lack of blood).

So because Twin 1 is receiving all of the blood and nutrients from Twin 2 it is doing too much growing because of it. This is also causing it to pee to much and therefore creating too much fluid. All of this extra work is also very dangerous for the baby as the fluid may end up in the baby and around the heart, which may cause heart failure.

If one of the twins dies whilst inside of me, its not a good story for the other twin as the blood will still be coming from that twin and may be toxic and may die, or it will be born and then have complications of either having heart or brain damage.

Now sorry to scare you all with that information, but it is what we are dealt with and we want have this information correct for everyone. Now the Twins are not the cause of this TTTS – it is the placenta that is naughty and causing this.

So when we got to Perth (after a slight delay – due to the doctor we were meant to see was hit by a car the day before, so they had to rearrange us to the Friday, which meant we didn’t know if the laser surgery could be done or not the next day) We saw the Doctor and also Prof Jan Dickenson (who didn’t talk to us) and they done a scan. Doctor was a nice guy and asked us what we knew so far. So apart from what we have been told,  it was that we may have TTTS and we were there at King Edward to get a confirmation on this. After a long time looking at the twins, (Doctor was funny as it was like he was playing a video game and turning his head to see around corners and zooming in, he was getting closer to the screen.) we have found that Twin 1 is around 138grams and Twin 2 is around 113 grams. Now this may not seem a lot to us in the outside world but that difference in weight to the docs – it is a big deal. They also spent a little bit of time talking to themselves and what we presume was checking out the blood flow. They didn’t talk much about that bit to us so we are not too sure what the norm is or anything. After they had their little chat we were then told what we didn’t really want to hear. That the TTTS was at Stage 3, this is more than we thought.

There are five stages of TTTS –

Stage 1: no/little fluid around one Twin (Twin1 had over 10cm of fluid [the norm is under 8cm] Twin2 has only 1cm and that was near his belly/or head).

Stage 2: An empty bladder on donor twin – well Doctor never said he found one and from the scan in Kalg – she just had one so from that we thought we only had Stage 1

Stage 3: Abnormal blood flows in umbilical cord of either Twin – well we must have that with the donor twin as they were on that area a long time, but never told us anything about it.

Stage 4: Hydrops (Heart Failure) in recipient Twin – not there yet

Stage 5: Death of either Twin – not there either yet

So this was a shock to both of us, and from that, we really need the laser surgery, and being Stage 3, this is the last stage and is critical that we have the surgery. But after the surgery, they will need to do weekly scans on me to check the progress of the twins and that means I/we have to stay in Perth for that time. But they wanted me and the twins to be another week along before they can do anything so the laser surgery is booked in for Friday at 2pm. With having a scan at 8:30 before being admitted. So a little about the laser surgery

The laser surgery is called Fetal Laser Surgery, which is a fairly new treatment (10 years or so) and King Edward is the only place that does this type of procedure in WA. What they do is under a small amount of sedation (I have to be awake for this procedure – so some people remember it some people don’t, but I won’t feel a thing) they will pass a small telescope through my belly into the placenta and they then source all of the blood vessels that connect the twins on the surface of the placenta. Once they have found these, they then laser the vessels off so that they are not connected anymore and stop the process of TTTS. I will also get to see my babies in the flesh, I’m hoping for photos to show everyone.

Now like all surgeries there are complications to me and the babies. For me, bleeding around or in the placenta, and/or infection. For the babies, breakage of the membrane, disabilities of the twins or either death of one or both twins. Now if one twin does die the other is protected so that is one positive. Also the week after the surgery, with the changes of blood supply there is a chance of fetal death in one or both babies. The percentages of all this are, there is a 75% chance of just having one baby in the end, 25% chance of having both and they can not guarantee that there wont be complications and/or one will have a disability. But they are going to try their hardest to deliver us some healthy babies at 36 weeks. If worse comes to worse, they will be delivered at 26 weeks and will be in hospital for a very very long time. There were pictures on the wall while we were waiting of twins that were born at 26weeks and were in hospital for a while but they survived. They were tiny but they survived. That gives us hope.

Can you believe that one of the midwives told us before the scan that we were the 10th mo/di set of twins they saw that day, and Doctor said that we were the 5th with TTTS but we were the worst so far. I felt sorry for the next lot of family coming in for a scan after us as I was balling my eyes out in the room and coming out of the room after getting this information. But everyone at King Eddy are lovely and sympathetic towards us in regards to this. I think we broke down like that due to holding it all in and only really seeing the positives of everything. For instance, they found a membrane! We were happy about that. Also, we thought we only had stage 1 of TTTS, but finding out we had another two stages on top of that was a shock, and Doctor didn’t really hold back in regards to the good and bad news, although it was mainly bad in our eyes.

All we have to figure out now is where to stay and how Rohan and I are going to be together for the scans each week and also work. We think that both our work will be accommodation for us. It is mainly though we have both just started our jobs in the last 6 months or so and things are really quiet here. I think I will be fine as my work has a workshop in Perth so I can either work from there or work from where ever I stay. (So hence getting everyone’s email address’ as I will have my laptop with me) The other is Rohan, and although he may have a week up his sleeve in holidays, we need to service his car (which he can do) to get it from Kal and back each weekend. Also try and arrange to have the scans done on a Friday so that we can both be together for the scans and we both can ask questions.

So the accommodation side of things is where to stay, and I know most of you will offer and thank you for that. But before and after the surgery we will stay with Paul only due to being closer to the hospital if anything does go wrong we aren’t that far away and once we are out of the woods, I will stay with Aunty Lorna as it is closer to the Perth workshop for work and if I need to have a cry, I know I can. :o)

So I think that is all we can think of and if there is anything else I will write another ‘essay’ to explain everything. This has been a therapeutic way for me to get my emotions out and stop me from bottling up everything inside, so I hope you don’t mind reading these sorts of things.

All we ask for now is not to worry for us and the bubs, I think between Rohan and I and our families, we are doing enough of that. All we ask for is your positive thoughts and wishes and be amazed at the sorts of things the doctors can do to make sure these babies are in our arms next year.

Love to you all, Bobbi-Jo and Rohan xoxoxox

PS If someone has missed getting this, please send it to them and let me know their email address so that I can keep them updated when we can.

Second Scand 15/10/14Twin 2

Twin 1