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The TTTS Foundation

@tttsfoundation

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#TTTS #FIGHTTTTS #twintotwintransfusionsyndrome including #TAPS #twinanemiapolycythemiasequence #SIUGR #TRAPsequence #TAPSisSILENT
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October 3rd #DrJulianDeLiaDay

Rachel was diagnosed with TTTS and desperate to save her babies -

"We were beginning to lose all hope because none was given to us by any doctor surrounding us. We were told to expect to lose one or both babies.

We found Mary and The TTTS Foundation and she got us in touch with Dr De Lia. Instead of leaving a message with a receptionist or nurse, Dr De Lia answered the phone himself!

He explained everything he could to me about our situation and on the worse day of our life, he actually had me laughing a bit by the end of the conversation. He was such a calming presence for me.

We traveled 6 hours from home a few days later.

We had an anterior placenta and he performed our surgery at 17 weeks along at stage 4. I felt the entire time as his patient, he prioritized my care and saving my babies over everything else!

He continued to keep track of our progress after we drove back home for the remainder of my pregnancy until we delivered at 35w and 6 days.

I will forever be grateful to Dr De Lia!"
-Rachel

Dr. De Lia cared about our babies before anyone else ever did. Doctors told every patient there was nothing that could be done. Even after the first surgery 38 years ago today, it took years for doctors to finally accept his work. With the help of The TTTS Foundation, hundreds of parents found Dr. De Lia through us and our website when their doctors would not tell them.

We love you Dr. De Lia and we honor you today and how you have changed the world forever with your love and compassion to all babies. I miss you with all my heart and we will continue your work always.

@tttsfoundation -Mary

#TTTS #fetaltherapy #tttsawareness #tttssurvivors by @tttsfoundation

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13 days ago

Mark You Calenders- October 3rd is Dr. Julian E. De Lia Day

On October 3rd, we internationally honor Dr. Julian E. De Lia who pioneered laser surgery on the placenta for the treatment of twin to twin transfusion syndrome and and twin anemia polycythemia sequence, a form of TTTS.

October 3rd is the 38th anniversary of Dr. De Lia's first laser surgery performed on October 3rd, 1988 at The University of Utah Health Sciences Center. His lifesaving surgery is now performed thousands of times in care centers all over the world giving babies a chance who otherwise face an 80-100% mortality rate.

No matter who you had laser surgery with, you never would have had it if Dr. De Lia had not cared enough about saving our babies and inventing the procedure. Nobody cared about fighting TTTS until Dr. De Lia came along.

He saw the devastation TTTS brought families and felt that he could make a difference in this cause. He studied the placenta, lasered the placenta of monkeys who only gave birth to identical twins, and performed the first surgery on a mother 38 years on this day.

We honor Dr. De Lia for his extraordinary and brilliant, scientific and pioneering contributions to his cause. His legacy is carried on in all the generations of babies he saved and family he gave hope and help to. His work will always be carried on through @tttsfoundation

Please share this post and help us honor Dr. De Lia on October 3rd by tagging us in your stories and posts @tttsfoundation

Contact us to to have your laser surgery story featured and how Dr. De Lia changed your life.

Follow our page @tttsfoundation and learn more at tttsfoundation.org about our passionate and dedicated fight to save the lives of babies and honor all of the babies who have suffered.

#pioneeroflasersurgery #fatheroffetalmedicine #apromisekept #daisybabies #formatthewandsteven #twintotwintransfusionsyndrome #ttts #tttssurvivors #fightttts #fetalsurgery #fetaltherapy #SIUGR #TAPS #twinanemiapolycythemiasequence #selectiveintrauterinegrowthrestriction #tttsfoundation #TAPSisSILENT #fetofetalestransfusionssyndrom #syndrometransfuseurtransfusé #tapssurvivors #tttsawareness #tapsawareness #sfgr #monoditwins by @tttsfoundation

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22 days ago

My twin son Steven passed away 37 years ago today, September 28, 1989. As I held his twin brother Matthew in my arms, we blew kisses and laid daisies down at Lake Erie and have every year since.

It feels just like minutes ago. It is forever a devastating loss. TTTS robbed me of my son and all the generations to come. I promised them both on the day they were born that they would be known and remembered and that I would find the answers.

This day is so incredibly hard. There are no words to describe the depth of pain, grief and sorrow. I can only cry. Steven, my love for you has helped hundreds of thousands of babies all around the world. Your legacy lives on forever as we continue to fight just like you did. We will never give up. We will always be together. I will always have you in my arms, just like Matthew. Mommy loves you Forever Eternal.

#formatthewandsteven #forevereternal
#apromisekept #DaisyBabies #fetaltherapy #tttsfoundation #ttts #siugr #sfgr #twintotwintransfusionsyndrome by @tttsfoundation

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19 days ago

Tremendous Hope for Families Diagnosed with TTTS

Led by Imperial College London and Imperial College Healthcare NHS Trust, this world-first study found that high-intensity focused ultrasound (HIFU) can safely stop blood flow in the abnormal placental vessels that cause the condition, without adverse side effects, thereby satisfying the Phase 1 study.

The second phase of the study will aim to determine whether HIFU can stabilize or reverse TTTS. The team is now planning a larger clinical trial with 50-100 women to assess this. If successful, this treatment could be offered to patients with the condition outside the trial in the future.

Led by Professor Christoph Lees, head of fetal medicine at Imperial College Healthcare NHS Trust and professor of obstetrics at Imperial College London, and published in the American Journal of Obstetrics and Gynecology, this is the first-in-human study of its type in early-onset TTTS (12-17 weeks) on anterior placentas and involved 10 women from the UK and Europe.

This new study found that the procedure successfully blocked blood flow in 90 percent of treated placental blood vessels. Those women who took part and their unborn twins experienced no adverse effects. The treatment was well received by the women who took part.

Brioney Garrett's twins survived after her anterior placenta was treated with HIFU. Brioney says, "I feel that any woman offered the opportunity to participate should jump at the chance."

All of the mothers in this study are heroes, fighting for their babies in the midst of being diagnosed with a horrible condition out of everyone's control. We honor them and their precious children.

The TTTS Foundation is proud to partner with Dr. Lees and his team to fight for the lives of all babies diagnosed and to help all parents have the chance to try to save their babies. We will continue to do all we can to help families participate in the study.

For more information and direct help, go to tttsfoundation.org

#ttts #twintotwintransfusionsyndrome #HIFUforTTTS #tttssurvivors #tttsawareness #formatthewandsteven #daisybabies by @tttsfoundation

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3 months ago

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5 months ago

He is risen. Happy Easter.

Thank you Lord for your blessings upon The TTTS Foundation and our work to save babies and comfort and guide families all around the world. With You all things are possible and we will continue to fight every day. We believe. Sending all our love and support to everyone. by @tttsfoundation

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6 months ago

An amazing book @possibilitiesbook to share with your children, grandchildren, family and friends. A portion benefits the fight against TTTS in honor of Cindy's daughter Aly. I encourage you to purchase a book or ebook today and help us keep fighting as we share the message of possibilities for all children.

From Cindy-

I am a mother who experienced TTTS with my daughters who each earned their angel wings 28 years apart. I have volunteered as the special needs coordinator for the TTTS Foundation working hand in hand with families just like mine for the last 30 years and counting.

‘Possibilities’ was written from my heart to be a voice for my non verbal, non ambulatory daughter, Alyson. The book was written to help facilitate acceptance and inclusion by helping the reader gain bravery to be who they were created to be and realize we are all made to be different-yet we have more in common than we may assume at first glance

A percentage of all sales of ’Possibilities’ benefit the TTTS Foundation. $1,400.00 was recently donated to the TTTS The Twin to Twin Transfusion Syndrome Foundation TTTS, TAPS, SIUGR, TRAP from book sales in its first year being published. ‘Possibilities’ has been nationally recognized by the Disability Book Week Organization as an all inclusive disability read. Such an honor to be able to carry Aly forward, on this side of her life, with so much support and recognition.

You can order author signed copies directly from me, or online from Amazon and Barnes & Noble. DM me for author signed copies or use link to purchase online https://a.co/d/01RXQIM8

@possibilitiesbook @tttsfoundation
#ttts #tttsawareness #tttssurvivor #daisybabies #FIGHTTTTS #whatisTTTS #twintotwintransfusionsyndrome #shareyourtttsstory #survivingtwin by @tttsfoundation

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8 months ago

Thank you to everyone around the world! by @tttsfoundation

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8 months ago

LAST 24 HOURS to buy a FIGHT TTTS shirt! Only sold once a year! Time is running out. Get yours today @tttsfoundation!

Help us reach our goal to help more families in crisis. We need your support!

https://www.customink.com
/fundraising/fightshirt

#fightttts
#twintotwintransfusionsyndrome
#TTTS
#tttsawareness
#tttssurvivors
#TTTSfoundation by @tttsfoundation

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9 months ago

Happy New Year and God Bless You

May this new year be one of peace, joy and safety.

With all our love and support to you and your family always.

The TTTS Foundation is here for you and thank you for all of your support so we can continue to help babies all around the world in 2026.

#DaisyBabies
#ForMatthewandSteven
#apromisekept by @tttsfoundation

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10 months ago

December is The TTTS Foundation's International TTTS Awareness Month

Fact # 31

"TTTS is a powerful disease - but it is not stronger than a mother's love."

December is International #twintotwintransfusionsyndrome Awareness Month.

Please follow us @tttsfoundation on Instagram and https://www.facebook.com/tttsfoundation to help us increase awareness by sharing our fact graphics and personal stories every day.

Let your voice be heard for yourself and your babies. Learn more at https://tttsfoundation.org/ and make an end of year tax deductible donation at https://tttsfoundation.org/donate

#ForMatthewandSteven
#apromisekept
#internationaltttsawarenessmonth
#worldtttsawarenessday by @tttsfoundation

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10 months ago

December is The TTTS Foundation's International TTTS Awareness Month

Fact # 30

"Stage 5 TTTS is sadly diagnosed when one or both babies pass away."

I remember this day like it happened a minute ago, even though it was 36 years ago. I feel such pain and sorrow and I feel yours too. I am so deeply sorry to all who have this horrible loss really too deep for words. -Mary

December is International #twintotwintransfusionsyndrome Awareness Month.

Please follow us @tttsfoundation on Instagram and https://www.facebook.com/tttsfoundation to help us increase awareness by sharing our fact graphics and personal stories every day.

Let your voice be heard for yourself and your babies.

#internationaltttsawarenessmonth
#worldtttsawarenessday by @tttsfoundation

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10 months ago