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 5^th 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.

Twin 2

Twin 1