Sunday, December 6, 2009

World TTTS Awareness Day - Our Journey with Twin to Twin Transfusion Syndrome

World TTTS Awareness Day
I don't know if I've ever really talked about my twin pregnancy on my blog, but let me tell you...it was a hair raiser.

When I was about 18 weeks along, I was diagnosed with twin-to-twin transfusion syndrome (TTTS). TTTS is a condition that can develop during an identical twin pregancy if the two babies share a single placenta. Basically, one twin gets too much blood flow from the shared placenta, while the other doesn't get enough. This can lead to the death of both twins if it remains untreated.

My case was a pretty severe one. Because Aidan was getting too much blood flow, his heart was starting to fail from having to work so hard to pump the extra blood circulating through his system. And Owen wasn't growing as well as he should have been. And due to all the extra fluid I was carrying, I was huge and at risk of my water breaking...I was already measuring as if I were 36 weeks pregnant when I was only 21 weeks along.

I ultimately had to have in utero fetal laser surgery to try to sever the blood vessels in the placenta that the boys were sharing. We were given a 58% chance of both boys surviving it. I truly believe with all my heart that if we hadn't had this surgery, the boys would not be with us today. And my life would be very, very different.

One moment from the day of the surgery stands clear in my mind. Scott wasn't allowed in the OR, so he kissed me goodbye and I was wheeled in alone. Although not completely alone, because I had my baby boys with me. The anesthesiologist gave me an epidural, and I laid back on the table with my arms spread out beside me, starting at the bright lights above. I had the choice to either stay awake or be put to sleep for the surgery, and I had chosen to stay awake.

But then my blood pressure dropped, and I got very dizzy, and even though I was trying to be strong and brave, it all overcame me at that moment and I started to sob. The anesthesiologist asked me if I'd changed my mind about staying awake, and I said yes because I was worried my crying would somehow unsettle the boys or distract the surgeons. So they gave me some medicine to put me to sleep.

But before I drifted off, I stared up at the lights again, and I prayed. I prayed to God to let me keep my baby boys. Oh, please God, let me keep my baby boys.

And when I woke up, the boys were still there. And they were there the next day, and the day after that. And they were still there 15 weeks later when I finally gave birth to them when I was almost 36 weeks along.
I don't know why I was so lucky that day and for the remainder of my pregnancy. It would be easy to say that it was all God's doing, but I can't...because so many women don't have the same outcome that I did. And I refuse to believe in a God who would spare one woman's much-wanted babies while allowing another's to pass. Instead, I believe in a God who lets the world work its own way out of things...but who is present to comfort those who ask for it and are open to receiving it. And I was comforted that day.

I do know I will always be in debt to the doctors and surgeons who monitored me throughout my pregnancy and gave me and my boys the best care imaginable. And I am indebted to the TTTS Foundation, which gave me the tools to educate myself about TTTS and seek out the type of care that I received.

December 7th is World TTTS Awareness Day. And while my journey with TTTS is now over, I'll never forget what we went through. And I'll never stop hoping that one day no other mothers will have to go through it.

13 comments:

Pyjammy Pam said...

oh megan, i didn't know you went through this! i love your little guys, but i didn't know they were such miracles. :)

michaelmommy said...

Ok, crying at work! I remember when you typed us an email on your blackberry on your way to Ohio. How scary! Love you!

MamaOtwins+1 said...

Wow - I had no idea. I was lucky and although I was at risk for TTTS we never had a problem.

What a miracle!

Steph said...

I didn't know there was a TTTS Awareness Day! Oh how scared you must have been and how relieved when your baby boys were ok. I had TTTS but not til towards the end (32 weeks), but was always scared it the whole time. Thanks for sharing your story!

Helene said...

Your story is very moving! I saw a documentary once about a dr who performed surgeries such as yours and it was heartbreaking. Thank goodness, your boys arrived safe and sound and in good health!

Dani Hampton said...

I'm crying too Meg. I remember the fear I felt for you and Scott. I so wish we could have been closer to you (physically) when it was all happening.

f14boyle said...

I'm not sure I knew that your guys had TTTS. Wow. What a scary experience. So glad it all turned out ok! Oh, and by the way- this is Amy, I'm too lazy to sign out of Chris's gmail.

Megan said...

Thanks everybody! It was a very scary time. I don't think about it, or dwell on it, as much as I used to. But I'll never forget it.

Brandi said...

WOW, Megs!! Such a powerful entry!! Thanks for sharing this!

The Lane Family said...

Thank you for sharing this. Your story really touched me. We have had a couple of friends who's twins had TTTS and each lost one of their sweet babies. I do believe the Lord the knows all and that everything happens for a reason and all we can do is trust in him. What a blessing they made it through all of this and now are your active little boys!!

Sadia said...

Megan, I had no idea. TTTS and conjoined twins were a low rumble in the back of my head my entire pregnancy, but all we actually had to deal with was prematurity (33 weeks gestation). Thanks for telling your story.

Charity Donovan said...

I was asked to selectively reduce Nolan & Evan as they are the identical pair in my BBBG quads due to the risk of TTTS...obviously it wasn't a choice for us...those little guys were meant to be!!! So glad your little blessings are healthy!!! =)

Floridagirl37 said...

Great Story! I was diagnosed with TTTS at 17 weeks and was immediately flown to Cincinnati for the surgery. Both of my little ones(Aiden and Mason) are here today because of it!