Twin-to-twin transfusion syndrome!

Saturday, March 7, 2009

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.

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)


Brandi said...

I am so glad the surgery was a brilliant success for you! Your boys are absolutely adorable, and such fighters! I was one of those lucky moms who didn't have a clue the entire pregnancy that our babes were sharing one placenta. We went the entire time thinking there were two separate placentas. I consider myself lucky because I worried about everything. I didn't voice alot of my concens, but I was scared. To much time on the net can do that to you! So when the boys were born in our rush delivery (no incubators in the room, no time to get to OR "just in case", nothing signed except for my paperwork I had already done a couple weeks before), and the doctor declared one placenta, no fusion I almost died. Then I thanked God for keeping my babies safe through the pregnancy and letting me have that one less worry. I do often wonder how I would have reacted if we had realized sooner that there were one placenta. I probably would have driven the doctor crazy.

Grandma said...

Only a mum (& possibly a dad) would remember such significant dates!!! I'd forgotten how close we'd all come to losing them before knowing them....God has been very good to you, them and us all, in allowing them to be born. I felt very sad as I read of your grieving tears alone, but then sometimes we all need to be alone to grieve (and it was pretty hectic at our place at that time lol!!!). You know Renata that maybe it all had to happen that way - after all how would the rest of us (even occasionally you!!!) have ever been able to tell them apart. You've no idea how many times I've snuck a peek at their arms to tell them apart. Seriously though, your testimony is evidence of God giving His peace, strength and assurance in that time of extreme need. Zai & Elly were so good during that time too!!! Give all 4 of them a huge hug & give thanks for them the next time those boys do something (like sliding through spilt milk on their chests!!!!) typical of their age. Praise God through Whom all blessings you all heaps Mumxxxxxxxxxxx

Grandma said...

ps thanks for the gorgeous's hard to remember them being that tiny!!! Love em all Mumxxxxxxxxxxxxxxxxxxxxxxx

Cheryl Lage said...

A wondrous, wondrous post and story.

You have done such a great service to so many by doing this ...God bless you and those beautiful babies! :)

Mum-me said...

What an amazing story and a wonderful testimony - thanks for sharing it. Praise God that your gorgeous twin boys are healthy and that your faith was strengthened through the whole experience.

Mummy McTavish said...

Even knowing they are fine now I had tears reading that. What a scary time for you. God has given man so many wonderful skills with medicine.

Lighthouse Prayer Line said...

Hi Renata,

Great post! The twins are adorable!

If you get the opportunity, please say a prayer for the requests that are on my main page.

God bless you and your family,

Mark & Lynn Seay

ps - Consider following our blog and/or grab one of our blue buttons (top sidebar) to link to us. :)

Cassandra-ann said...

OMG Renata, i had no idea you went through this with the boys, What an absolute miracle your babies are.
I love that you got look through the through the fetalscope, how amazing!!! Although it must have been scary i cant help thinking what a wonderful opportunity to see him like that...
I had tears reading your post, and they are so gorgeous! i love the pics of them as babies (and now too!) I would have loved a set of twins, you truly are blessed!
Cassandra xx

Sandra said...

Yes, well, I remember that awfully scary time too and how well you and Dave coped with it all. I know Craig was very upset doing your scan. And I was very upset because things had looked so well only a few weeks prior.
I was fortunate enough to go to a lecture by the lady who pioneered this procedure in Brisbane. Her name was Professor Fung Yee Chan.
She has since died, tragically. She was an amazing woman who is incredibly intelligent. What you had done Renata really comes down to her and her willingness to not let the truly tragic statistics for TTTS stop her from finding a way to improve outcomes. She learnt most of her skills by teleconferencing to doctors in Florida, America. And she was so willing to not keep her skills to herself and shared them with other highly skilled obstetrician like Glenn.
I thank God must whole heartedly for the wonderful outcome for the boys and how fantastically he has made them.
I thank God too for Monica's grandchildren who also had TTTS but had different treatment and whilst they were born with different birth weight are doing well.
Thanks Renata for sharing your story. As you can tell by all my passionate ramblings it made a big impact too on my life. Working in a smaller hospital we don't get too much pathology and often we don't get to see the outcomes. And it is such a good outcome!

Little Wonders said...

Just a quick hello from the other side of the world! One of my blog followers introduced me to yours, as we are in the middle of battling TTTS. I was diagnosed at 17w3d, had the laser surgery at 18w5d, and have been battling contractions since (I'm 22w now). But our girls have been hanging in there, and we pray for them every day. It was so encouraging to read your story, thanks for sharing it.

Heather said...

And what precious boys they are - Praise God for His wonderful blessings!

Your calm throughout this whole ordeal just shows your tremendous faith in the Lord, your trust in his sovereignty, and your submission to His will.

What a wonderful example you are to me right now. Thank you for sharing this story :)

Aunty Sel said...

Hey Narn,
Hows things?
Didnt get the cyclone in Tv but got some weird weather. Still doing assis.

Haf Dozen Reasons....... said...

Reading this brought tears to my eyes. What a testimony you have and what a scary time for all of you.

BoufMom9 said...

Wow! What a fantastic wonderful story so full of hope.
How powerful and what a huge blessing from God! Thank you so much for sharing your beautiful story.

Tan said...

It is hard to believe that day was three years ago. God certainly is an awesome God. The boys really are so gorgeous. We miss you all.
love Tan x x x

Hevel Cohen said...

I just got to your blog through someone else's, and just thought of three things. Both I and my twin brother and my twin sons wer emonoamniotic twins, me being an unexpected survivor of TTTS. I am very happy to read about your laser surgery, as the pregnancy with the boys was a nightmare since we found out they were monoamniotic. They are now almost 6. It is comforting to know that there is something that can be done!

I also realised how much I miss both Australia and farm life. :-)

And the third, I love your name! I have only met Renatas in Germany and Hungary and then in Israel, but they were all Hungarians. I love the meaning of the name! :-)

Anonymous said...

Hi Renata,
I'm so glad Michael emailed me in regards to some carpet for the Church, because it led me to your blog, your story about the boys is amazing, I have heard you talk about it in bits & pieces, but to be able to read it, you brought me to tears, it was so beautifully written, we are so blessed to have you & your gorgeous family in our lives, will catch up with you during the week, lots of love Renae xx

Anonymous said...

Your blog keeps getting better and better! Your older articles are not as good as newer ones you have a lot more creativity and originality now keep it up!

Rebecca said...

Your story is amazing! My twin girls had TTTS too. They caught it at stage 1 and I had surgery 6 days after in Toronto Canada. By then we were stage 2. It was March 10 2009. I'll never forget that day. Both survived and are doing well. Born at 36 weeks. So happy for your family!

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