About this campaign
As you may know, we lost our beautiful twin daughters on June 1, 2022
as a result of Twin to Twin Transfusion Syndrome (TTTS) and its
complications. TTTS only occurs in identical (monochorionic)
twin/triplet or higher multiple pregnancies where the babies are
sharing a placenta. It happens in about 15% of these types of
pregnancies. Both of our girls were perfectly healthy; TTTS is solely a
disease of the placenta that is being shared by both babies.
TTTS is completely random and there is nothing you can do to prevent
it from happening. There is nothing that predisposes you to it or makes
it more likely that you will develop it. It is not genetic. It is not age-related. It is not caused by anything the parents did, or anything the
babies did. Both the babies and the parents are innocent bystanders.
TTTS can happen to anyone pregnant with monochorionic
twins/triplets/higher multiples.
TTTS involves an unequal sharing of blood through connections in the
placenta. One twin (donor) pumps blood to the other twin (recipient)
which causes the recipient to receive too much blood and the donor to
receive too little. The increased blood volume causes the recipient to produce more than the usual amount of urine, resulting in excess
amounts of amniotic fluid. The donor produces less than the usual
amount of urine, resulting in too little amniotic fluid. This condition is
very dangerous for both babies.
The TTTS Foundation is dedicated to providing immediate and lifesaving
educational, emotional and financial support to families, medical
professionals and other caregivers before, during and after a diagnosis
of twin to twin transfusion syndrome including TAPS, SIUGR, and
TRAP.
December is International TTTS Awareness Month. World TTTS
Awareness Day specifically is on December 7. Awareness month was
founded by the TTTS Foundation as a collaborative effort around the
world to increase awareness and educate the public of the risks of
being pregnant with monochorionic twins, triplets, and higher multiples
and directing them to the TTTS Foundation for immediate help and
information during their pregnancies.
The shirts and sweatshirts are all light blue in color because The TTTS
Foundation is fighting for the day after the storm, when the skies turn
blue and all of the babies will survive, be healthy and thrive like daisies
flourishing in a field. All babies affected by TTTS are called Daisy Babies.
The TTTS Foundation has been wonderful in supporting our family
through this difficult time. The Foundation has connected us with other
families who have lost both of their twins to this disease and we know
we are not alone. Our hope and prayer is that no family has to suffer
like we are through the devastating heartbreak of losing their beautiful
babies to this terrible disease. That is why we support The TTTS Foundation in their journey to fight TTTS.
We hope to honor our Josie and Lily by
increasing awareness and helping to save lives in the future.
In early February of 2022, Zack and I were overjoyed to find out I was
pregnant. A couple of weeks later at our 8 week ultrasound, we found
out we were having identical twins! It was such a special moment that I
will never, ever forget. I still have flashbacks to that ultrasound when
the tech looked at us and said “There’s your baby, and there’s your
OTHER baby.” I screamed so loud, and immediately began crying tears
of happiness. Zack could not believe I was right, as I had been telling
him I had a feeling it was twins. In fact, I had been telling Zack long
before I was even pregnant that I just had a feeling we would have
twins someday. I even started praying for twins and our prayers were
answered.
As the weeks went by and we shared the news, our friends and family
were so shocked and beyond excited to find out we would be having
identical twins! We were over the moon. After finding out we were
having twins, we were transferred from my Dr. to high risk pregnancy
specialists. We knew the pregnancy was high risk and we were
monitored every two weeks through ultrasound for signs of TTTS.
Everything was going smoothly. At our 16-week appointment, we
somewhat inadvertently found out that the babies were girls and we
were on cloud 9. We were so thrilled as we pictured life with two little
princesses. However, they told us to wait until the 18-week
appointment to confirm the gender, so we kept this little secret to
ourselves for two weeks. I had wanted to be surprised with the gender;
Zack wanted to find out. In hindsight, I am so, so happy we found out the way we did and when we did. I sometimes feel that was God’s way
of letting us enjoy the news of two little girls before they went to
heaven with Him. We went to Naples, Florida that week on a little
babymoon, and were able to really enjoy and look forward to the life
we had planned ahead.
A couple of weeks later things took a turn. At 19 weeks and 4 days, we
received a diagnosis of Stage III TTTS. That same night, I underwent
emergency surgery to try and correct the TTTS. We had no choice but
to do the surgery. Things were progressing so quickly that if we did not
do it, we would have lost them both in a matter of days to the TTTS.
The emotions of that day were so overwhelming. It was so much to
take in. We prayed and prayed. We had people from all over the world
praying for us and our babies. Both babies survived the surgery and we
were so, so thankful. We knew we were not out of the woods
completely and that we would need continued monitoring at least once
a week and I was also to be on bed rest for the remainder of the entire
pregnancy.
However, two days after surgery, my water broke at home and I was
going into labor. Water breaking and/or preterm labor were risks of the
surgery, but we had to do the surgery to save our daughter’s lives from
the TTTS. We tried everything we possibly could to save our babies, but
our beautiful angels, Josephine Lynne and Lily Pamela, were born on
June 1, 2022, at just 20 weeks and 2 days. Their middle names are
after their grandmothers.
We held Josephine and Lily in our arms and took pictures with them.
They were absolutely beautiful and perfect. They had such a special
bond with each other. They melted our hearts as well as the Drs. in the room. They were baptized by a chaplain. It still breaks my heart that I
was powerless to stop all of this.
Losing them broke our hearts and left us completely devastated, but we
will always, always cherish the time that we had with them, and the
time I knew them in my belly. We will always dream of who they would
have been. They are the first thought that crosses my mind every single
morning. They will always be a part of our family. Our first-born
children. I carried them for 5 months but they impacted our lives
immensely and our love for them is forever.
We are so thankful that we are lucky enough to be the mommy and
daddy of two perfect angels. I know they are in their TRUE home in
heaven. We look forward to reuniting with our sweet Josie and Lily
again someday, and I know it will be beautiful. Until that day comes, I
know they are in perfect peace and happiness in God’s arms.
Thank you for your support in the fight against TTTS in memory of our
beautiful daughters. It is so important to us to keep their memory
alive.
Supporters
In loving memory of Josie and Lily Weiss
Zack and Brittney are good people who i know will make great parents
We love you guys! Jack & Sheila
In memory of Josie and Lily Weiss