Twin-to-twin transfusion syndrome!

I have been asked a few times about TTTS. This is our story...


Twin to twin transfusion syndrome (TTTS) is a condition in which blood from one twin (the donor) is transfused into the other twin (the recipient) via blood vessels in their common placenta. It occurs in 15% of identical twins that share a placenta (about two percent of all twin pregnancies). While uncommon, it has potentially serious and life threatening effects upon both twins.

Mater.org.au

Today marks 3 years since the laser surgery that saved my babies lives. On Sunday, 5th March I went into early labour at 27 weeks with my twin boys. At this point we hadn't even known whether they were identical or fraternal twins - although the massive single placenta pointed towards identical. Our obstetrician had decided to be diligent & treat as if identical, so I was having monthly u/s at this point (it was to become fortnightly at 28 weeks).

I had had an u/s 3 weeks earlier that showed no problems at all. I saw it myself - nothing to worry about (by this time I had seen a lot of obstetric u/s - as a radiography student I loved watching these - & I had had 2 previous pregnancies while working -thus making it easy for me to ask the wonderful sonographers to scan my bubs often! ). Anyway back to 27 weeks.... I had been having contractions on & off all week - nothing to make me yell ... just enough to take my breath away. I had a feeling something wasn't right, but couldn't put my finger on it - I did however think that the Braxon-Hicks' (that's what I thought they were) were extra bad with this pregnancy - but put it down to it being a twin pregnancy. However when I had a show, I knew I had better stop messing around & ring the hospital - the midwife told me to come straight in. Fast - forward a few hours & the Dr had given me medication to stop my labour (although the contractions didn't stop til that night). She had also requested an u/s - & since the sonographer was in (besides the fact that I had worked in that radiography dept with this fellow) he said he would scan me. It wasn't long before we knew something was dreadfully wrong. My boys had twin-to-twin transfusion syndrome - stage 4. They were near death. The recipient's (Eli's)heart was working overtime with the excess of fluid it had to pump through his over flowing body. He had fluid around all his abdominal organs & brain. He also had massive amounts of fluid in his sac around him. This baby was very, very sad to look at. The other baby - the donor (Jud) had almost no fluid around him. He was the "squashed" twin & he really was squashed. His left arm was stuck down by his side - he has a birthmark now where my pelvis was pressing on the arm! He had the minimal amount of blood going into his brain that they like to see. My colleague shook his head & sadly told me he hadn't seen any cases this bad survive - he was very professional & caring about it - but I was glad for the truth. I quietly excused myself & had a little cry in the toilets, but I felt God's presence ever so much. I also felt that I should not give up - No way!

I'll never ever forget that u/s as long as I live.

Well they shipped me off to a major hospital in Brisbane ASAP. There I was taken to the labour ward & monitored. I didn't arrive there until the late afternoon, but even with it being Sunday, they called a maternal fetal specialist in to give me a thorough u/s. (Poor old Dave I gave him a quick list of things to pack for me - I'm so thankful that at this point we lived down the road from my parents, so they just took over the total care of Zai & Ellie). I had an U/S at 10pm from the specialist who was a little positive. She said that another maternal fetal specialist who was working at that hospital on Monday also did the TTTS laser surgery at the other major hospital in Brisbane (this was the first hospital to do these surgeries in Australia -they have international patients come here - isn't God great that I lived right there as they probably wouldn't have let me fly.) She thought we (as in the twins & I) would be perfect candidates for the surgery, but it was up to the specialist tomorrow. So I was sent to the maternity ward to spend the night.

The next day I was taken down to meet this specialist - Dr Glenn Gardiner & he did an u/s (yep I'm an expert). He came up that evening & talked to Dave & I. Basically we had a few options:

1. Leave the babies as is - this would result in death for both within a week.

2. Deliver now - this would result in guaranteed death for Elijah (that little heart would go into cardiac arrest) & almost probable death for Judah as he was so small (donor babies are underdeveloped for their gestation due to not having sufficient blood to develop).

3. Tie off recipient's cord. - Yep this is basically aborting Eli, but it would almost definitely guarantee Jud's birth. (We refused this straight away - besides the fact that we don't believe in abortion, choosing one brother life over the others seems completely wrong.)

4. Laser surgery on the placenta. This held a risk 60% chance of both bubs surviving - 70% chance of one. This was also an experimental surgery. We were perfect candidates for it (I think as there was so little hope otherwise).

I was booked in for laser surgery the next day.

That night I couldn't sleep. At this point I hadn't really cried except that one time in the toilets, but I think this is when it hit me. I cried silent tears in my pillow & ended up spending hours awake reading the Psalms. God gave me the strength to keep strong. Early that morning I felt panicked because my babies weren't named - we'd talked about names, but hadn't decided. I didn't want to loose either of my babies unnamed, so I named them - 3 years ago today!

The next day we travelled to the other hospital & met with the laser surgery team. We met the professor who was to help Dr Gardiner in the surgery. We met the dedicated team of nurses - who are so trained for this. We met the anaesthetist who assessed me. And they all said the same thing " You are just so calm" - little did they know that God was carrying me. I knew complete peace that this was His will & my babies were completely His. I always knew that if God wanted my babies to live, they would - & if they didn't they would be with Him.

The surgery was an interesting experience - you see it's safer for the mother to be awake during these things, so it's actually done under local anaesthetic. I found it so interesting listening & watching the baby on the screen (That's the radiographer in me!!!). They put a fetascope into the recipient sac (filled with fluid) & along with that a laser & then they burn connecting blood vessels on the surface of the placenta. Once they realised that I was watching - they stopped & let me have a full look at Elijah through the fetascope - it was amazing seeing a beautifully formed baby at 27 weeks. He was moving - he was perfect - a miracle from God. At the end of the surgery they were relieved to see two beating hearts - the next 24 hours was critical.

The next day we were all relieved to still see two beating hearts - although I already knew that as the boys were the most active they had ever been. It was amazing not quite 24 hours had passed & already Elijah's heart was looking much better - the abdominal fluid had began to resolve & the operation deemed thus far a success!!!

Fast forward to 34 weeks & two healthy baby boys were born. Elijah's heart still had a thickened muscle & we didn't know if either boy was going to suffer from CP (which they were cleared of last year!!!!), but we weren't even concerned about that. We are so thankful to God for our boys. We don't know why God chose to allow both boys to live, but we do know he has a reason why.

For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.

Jeremiah 29:11 (NIV)