Twin-to-twin Transfusion Syndrome

Hello again! Well this is my second blog post and it's a bit of a heavy one as I'm going to do my best to explain Twin-to-twin transfusion syndrome and our experiences with this disease.

First, the factual info: (borrowed from the TTTS foundation website) http://www.tttsfoundation.org/

"Twin to Twin Transfusion Syndrome is a disease of the placenta that affects identical twin pregnancies. TTTS effects identical twins (or higher multiple gestations) who share a common monochorionic placenta. The shared placenta contains abnormal blood vessels which connect the umbilical cord and circulations of the twins."

Our experience...

We were told very early on in our pregnancy that there was a risk of the babies developing TTTS. It was obvious that they shared one placenta and had only a thin membrane seperating them. I guess our doctors and sonographers didn't want to alarm us or instill fear as the disease was very much played-down. Most of our questions were answered with the standard response of "well, we will worry about that IF or when the time comes". I did some research online, but as soon as I encountered the many listings of memorials, I soon developed the same attitude.

My pregnancy showed NO SIGNS of TTTS until I was 31 weeks pregnant. This was a blessing for us as many pregnancies develop the disease much earlier.

NOTE: If you are currently pregnant with identical twins and have learned there is a risk of TTTS for your babies, I would like to suggest the following as things which I believe helped us in our situation - they may work for you, they may not....

1. DO NOT torture yourself reading or watching memorials. This disease is VERY random and there are no two pregnancies alike, therefore you will not find another story similar enough to make a prediction on your pregnancy!

2. REST! I have read frequently that doctors have prescribed bed rest for women whose pregnancy has developed TTTS. During my pregnancy, my body seemed to know this and gave me no choice but to rest. I just didn't have the energy and when I did exert myself I ended up in severe pain. (I have to add here a little side note that just days before I was diagnosed with the TTTS I went on a long shopping spree which I found most difficult but was determined to finish getting the nursery organised! It's an interesting coincidence that my pregnancy was fine just days before hand and this was the week the TTTS started. My increased activity was the only unusual thing I had done.) It's not confirmed evidence, obviously, but as I said, an "interesting coincidence"!

3. TRUST YOUR INSTINCTS! Take special note of ANY changes in your body. I was told to watch for sudden swelling in the abdomen (faster than the usual pregnancy growth) and a feeling of tightness or fullness. I was not aware how quickly TTTS can develop. I had an ultrasound when I was leaving hospital after being treated for an infection at 30 weeks gestation and the babies were perfect - almost identical amounts of amniotic fluid in each sac. (A sign they check for to diagnose TTTS). That was Thursday. Monday morning I said to my family "If I didn't know better, I'd say I had TTTS!" as I had woken feeling that exact full belly feeling (though not tight) and just put it down to the babies' growth! On the Tuesday is when the next ultrasound revealed that we indeed did have a TTTS problem! A problem so great that the babies ended up being delivered 4 days later!

4. Keep a POSITIVE attitude and PRAY. Never give up Hope for your babies! There ARE success stories and we're one of them!

Pregnant with Twins

There is good and bad to tell here. It will probably sound like alot of bad (and it was) but the end result was SO worth it and I would do it all again!

I do not look back with fond memories of my pregnancy. It was my first experience of being pregnant. The early days were filled with excitement and joy when those early detection pregnancy kits (plural, of course! Snaps for anyone with a strong enough will to resist testing more than once!) displayed "Positive". Even more excitement when we discovered at an early ultrasound at 7 weeks that there were TWO heartbeats and that the TWINS were identical!

By week 8 I had terrible morning sickness (actually Hyperemesis - that's a whole other post in itself). Everyone had advice on how best to deal with it. "Have you tried Ginger?" seemed to be the favourite with most people. I recall a trip to the grocery store with an iron determination that I was going to beat this niggly little nausea with all the tried and true home remedies suggested. Crackers first thing in the morning; Lemonade; Peppermints; Vegemite toast; Ginger biscuits, Ginger lollies, Ginger Beer, Ginger sushi slithers, Ginger tablets, Ginger, Ginger, Ginger!! Even just looking at that list is enough to make you feel sick! My "niggly nausea" soon turned into an all day and all night spree. I was sick so frequently and so violently that I actually tore muscles under my rib cage. The pain was excrutiating and it wasn't until a trip to the hospital late one afternoon for an IV of fluids to treat my dehydration, that my doctor started to take my complaints seriously and put me on Zofran! Still only ONE tablet a day so eating was next to impossible but at least I could hold some fluids down.

There were some nice times throughout such as seeing those two little people bobbling about on the screen at each ultrasound and hearing all the good reports of their growth and development. It baffles me how they managed to get any nutrients from the tiny amount of food I was able to eat. I guess my lack of activity helped to conserve all energy for the babies' growth.

At 22 weeks into the pregnancy, the vomitting stopped. I was finally wanting (and able) to eat but only small portions at a time thanks to bloating and heartburn. Ligament stretching became my new issue as the twins grew rapidly during this time. I'd spent so long in bed and with very little nutrition that I now was anaemic, stiff and sore so walking around was very difficult. Even a short walk on the beach landed me in a hospital bed again the next morning with pain and frequent braxton hicks.

At 30 weeks I was again admitted to hospital with a severe urinary tract infection. High fevers and heart palpitations were threatening the babies' health and I was being prepared for the possibility of having to deliver the babies this early. I was proded and probed with tests, medicines and antibiotics trying to fight the infection and keep me from going into premature labour. Thankfully, the infection was gone within a week and I was able to go home. The ultrasound ordered prior to my leaving confirmed no dilation and babies all happy and healthy - settled in for another few weeks. Six, I hoped. Eight would be great, but that was not to be.

My routine (monthly) ultrasound was the following Tuesday. I was 31 weeks and 3 days pregnant. The usually chatty Sonographer was serious and quiet on this occasion. When she went for a second opinion, we knew there must be a big problem.

We were already aware of the risks related with my type of pregnancy. The twins shared the one placenta, putting them into a high risk category for developing Twin-to-Twin Transfusion Syndrome (TTTS). More on TTTS next post. A basic explanation is that one baby could begin to donate blood to the other baby through the placenta resulting in oversupply of blood in one baby and severe anaemia in the other. It is a highly life-threatening complication and rarely a good result when left untreated. The treatment in itself is invasive, dangerous and not always successful.

When the second sonographer confirmed the detection of TTTS in our twins, we knew it was not good. It was decided that we should book in for a Caesarian sometime during the next week. Although we knew all about the condition, we had purposely avoided learning about the statistics and so in the week that followed I was not overly concerned. The sonographer was quite relaxed that the babies had an excellent chance for survival being 32 weeks gestation by then and so I was satisfied. He scheduled in another ultrasound for the Friday to check what was happening.

Friday 13th - I had the first of two steroid shots early that morning with the second to be 12 hours later. This would help to develop the babies' lungs in preparation for premature birth. I was the last patient of the day for the ultrasound. Our regular sonographer was "Dr Comedy" (as we nicknamed him) - his dry sense of humour and tactless bedside manner were far from funny but the brutal, matter-of-fact honesty was somehow laughable and surprisingly appreciated in our situation. After the repeat ultrasound, he sat down on his swivel chair, dialled a number he knew by heart and leaned back putting his feet up on the desk infront of us. He hadn't explained anything to us, but we overheard "Yep, they've gotta come out or one's gonna cark-it!" and "I'll be sh*tting myself if it's not done this weekend!".

Right! Enough said... let's go! - That was my first reaction and off I went. Straight into hospital without stopping at home first (bags were dropped off later by my parents). Straight into a bed, second steroids shot, and hooked up to monitors. That's where I stayed all night with round the clock, tireless checking by the nursing staff. No time for sleep. These bubs were coming out by 9am if not by emergency sooner.

Wow, that's been a long post. I will try to keep them shorter in future. Next post I'll talk about the Twin-to-Twin Transfusion Syndrome...