TTTS Walk 2003 - Striper Talk Striped Bass Fishing, Surfcasting, Boating

schoolie monster · 05-06-2003, 12:32 PM

I missed the action down at the cape this weekend but it was for a good cause. Sunday was the Twin to Twin Transfusion Syndrome (TTTS) Walk 2003 up in Saugus, MA. As many of you know, my girls are TTTS survivors and my wife and I are now lifetime supporters of the cause.

The walk was a success and raised over $12000 to support TTTS research and raise awareness of the disease and its treatments.

We had a great time and were proud to contribute and walk.

Here is a picture of Dr. Ruben Quintero with the girls. He is the man that performed the surgery that saved Jess and Alyssa.

Van · 05-06-2003, 12:37 PM

Great cause and excellent news.

Glad they are both doing good. Your daughter must be having a ball.

schoolie monster · 05-06-2003, 12:44 PM

The walk had a turnout of several hundred people some who traveled pretty far to support the cause. And there alot of twinners there, but mine were the cutest.

We helped Dr. Quintero and his team with transportation over the weekend and it was nice to spend some time with them. We got a chance to really say "thank you" for what he gave us.

Just wanted to share that with my friends here on the site and it was a good chance to show off a couple baby pictures and let everyone know that they are doing great.

schoolie monster · 05-06-2003, 12:48 PM

Thanks Van... yeah, my 5 year old is starting to enjoy them since they are doing alot of smiling, laughing and playing now. She thought they were pretty boring for awhile.

Chaos is the best word to describe my house right now... but its pretty fun.

I gotta say though, I'm ready to get some time out of the house and get in some fishing in. I'm starting to get a little punchy.

JohnR · 05-06-2003, 12:56 PM

Great Work Greg! We'll have a raffle early summer here for some plugs or a reel or something too.

You K & B went thru a lot and it's GREAT, AWESOME, to see the twins doing very well!

BigFish · 05-06-2003, 01:19 PM

Sounds like a great cause and I can see by your photos
some great results due to the commitment of so many. Those are
beautiful kids and you'll get no argument from me as far as them
being the cutest twins at the walk. Take care of those "Little
Schoolie Monsters" Big Schoolie Monster and enjoy them, they
grow so fast. I should know, I have two "BigFish" of my own.
Boys 9 and 10. They keep me hopping.

Could you give
me a better understanding of what your daughters were treated
for.

Take care Schoolie Monster.

chris L · 05-06-2003, 02:40 PM

Greg the girls are getting big ! They definately are happy kids ! I think you and your wife did a great service ( transportation ) showing your appreciation to the Doctor for helping out . That must have made his day !

Now go fishing will ya , you deserve it !

schoolie monster · 05-06-2003, 03:39 PM

Thanks guys... Chris, I think Dr. Q got a little misty eyed when he met and held the girls for the first time. I think that's all the thanks he needed.

John, I left a msg... give me a call tonight if you get a chance... wanted to see how you guys were doin'...

Bigfish, TTTS stands for Twin to Twin Transfusion Syndrome. The short version is that it is a disease of the shared placenta. The mother is healthy, the babies are healthy, but their is a defect in the placenta. It occurs in 10-15% of identical twins... it does not occur in fraternal twins as they have separate placentas.

The defect is that there are extra blood vessels or arteries present that promotes unequal blood sharing between the babies. One baby, the donor, sends too much blood to the recipient. TTTS varies in severity. Sometimes very little blood is exchanged and the pregnancy can proceed fairly normally. Sometimes its so bad that a mother can lose one or both babies before she even knows she has twins. Our case was detected at 13 weeks, but you have to wait till 16 weeks to be sure its TTTS and not other birth defects.

The results of the unequal blood sharing are pretty bad. The donor baby doesn't get enough blood and becomes severely anemic. In addition, because of the lack of blood being processed, the donor baby doesn't produce amniotic fluid and becomes "shrink wrapped" in his/her sack. The other baby processes too much blood and causing the heart to work too hard usually resulting in heart defects or heart failure. This baby also produces too much amniotic fluid and his/her sack expands.

The other major issue with this excessive blood sharing is that if the donor baby dies, any infection or contaminants flows to the other baby often causing the recipient to die as well.

Untreated, TTTS is somewhere around 90-100% fatal to both babies.

Traditional treatment was amnioscentithis (sp?) or amnio-reduction where they basically stick a needle in through the belly and withdraw excess fluid. This doesn't help the donor baby at all and only marginally helps the recipient. This is a viable option for someone who has a milder form and they are only trying to put off labor for a few weeks.

Dr. Quintero's group has developed and continues to work on laser-photocoagulation surgery in which they go in and zap the offending vessels and arteries, therefore correcting the problem, and curing the disease. That is way oversimplifying things, but that's the basic premise of what they are doing.

While our case was fairly severe, we were also lucky in a way because the offending vessels were large and easy to find and the procedure went great. And Karen is a strong young lady and she and the babies came through wonderfully. You can see the results of when it succeeds. So much for the short version, huh? Anyway, gotta fly... my eldest daughter is waiting. Later folks and thanks again.

TheSpecialist · 05-06-2003, 04:09 PM

Greg the girls look adorable.

Clammer · 05-06-2003, 04:17 PM

Greg, NICE==============best for your family
Quickly puts fishing way down the ladder

GBOUTDOORS · 05-06-2003, 06:17 PM

Greg the twins look GREAT hope you and your wife are doing well. Now you need to get out fishing and to start posting more as I realy miss your reports!!!!!!!!!!!!!!

Slipknot · 05-06-2003, 07:30 PM

Fantastic Greg, you put a smile on my face reading it. I'm happy for all of you. It's a great feeling to be able to help out when you can to give a little something back. Best wishes for you and all your girls.

Saltheart · 05-06-2003, 07:35 PM

Oh No Greg! They look like you. We can only hope that changes by the time they grow up!

BigFish · 05-06-2003, 08:09 PM

Thanks Schoolie Monster for your "short version". Wow, I never
heard of this. Thanks for the education and continued good luck
with your daughters and your work. Talk to you soon.

Got Stripers · 05-06-2003, 09:27 PM

Those are two cute girls, you sure you weren't on an extended fishing trip around the time of conception

. Congrats on both those two precious bundles of joy and the success of the walk. Now you get out and walk a beach buddy.

Goose · 05-06-2003, 09:40 PM

True blessings indeed, take alot of pics.

Fishpart · 05-07-2003, 06:07 AM

Schoolie,
Beautiful children. I hope you enjoy them because they are truly a gift..

Tattoo · 05-07-2003, 06:19 AM

That one on the right looks like she is going to be a little devil. They sure are precious....I'll have to show that one to the little guy....he might be interested.

Hey John,

I think it's time for a Kid's Fishing Picture page.....

....and man they grow faster than lawn grass hoped up on miracle grow....