Our project has been heavily supported by families affected by Twin to Twin Transfusion Syndrome. Recently two families who lost one of their twins to TTTS made a donation to a hospital in memory of a third little angel who lost her battle with TTTS.
"Our sweet Angel Breleigh Hope Amiotte was born on May 24th 2012 at 3:54 pm, two minutes after her sister. She weighed 1 pound, .9 ounce (not even a full ounce over a pound). She joined the Angels at 12:15 am on May 26th 2012. This is her story.
As parents of a two and a half year old, we decided that we wanted to add another child to our family. Soon after we got the good news that we were pregnant. At the 16 week visit with my doctor, we heard our Angel’s heart beat for the first time. It was amazing, especially since we had no idea that her sister was there too. I was concerned as I had gained weight more quickly than I had expected and I felt as though my stomach was growing very fast. Due to my slight weight gain (only a couple pounds over what was expected) we were able to get an early ultrasound. At this ultrasound we were told that we were having twins followed by the fact that they had Twin to Twin Transfusion Syndrome (TTTS). Due to the TTTS they had a ten percent chance of surviving without medical intervention.
At 18 weeks we were told that we needed to fly to Cincinnati to be evaluated as to the current stage of the TTTS. We were put at a stage 4c and had surgery the following day. After the surgery things were looking better. Both babies’ hearts had improved and so had the fluid levels. At our 24 week ultrasound we were told that the part of the placenta that Breleigh had was failing and the pressure in her umbilical cord was increasing, which would result in the blood flow going absent and than reversing. When this happened she would die. We were told that if we delivered both babies now neither would have a very good chance of making it, so we decided to let Breleigh go in uterine and hope to save her sister (as long as all of the connections between the girls were severed with the surgery). This was the most difficult decision to make as the idea of letting one baby die in order to save the other one was heart breaking! I could not feel Breleigh unless I was on my left side as she was so small, so every night I would lye in bed and ask her to please kick me so that I would know that she was still ok. With every ultrasound I prayed for a heart beat and dreaded the day that there would not be one.
At 27 weeks gestation, after many agonizing days, we were told that we had reached a point in which they could deliver both of the girls when Breleigh’s blood flow reversed as they both had a chance of making it now. The next day there was absent end flow followed by reversed flow the following day. We were admitted and the girls were delivered the following day.
They did amazing. Both girls were called “rock stars” as they were doing so well. The following day they were both breathing on their own with the help of a c-pap machine and had even started feedings. I got to change their diapers and for the first time in a long time I thought everything was going to be ok. My girls were both going to make it! Little did I know that about 29 hours after their birth Breleigh would decline quickly. They re-intibated her and tried to get her to oxygenate again but nothing would work. I was so scared I could only hold her hand for a short time as I did not want to get in the way. I watched from a distance as they tried to save my baby for a couple of hours, but nothing would work. It is the most helpless feeling any parent can ever experience… At approximately 12:15 am I held my baby for the first and the last time as she passed away in my arms. She had fought so hard to make it, it is still hard to believe that after all that we still lost her. After we lost Breleigh her sister began following in her footsteps, so much so that the doctors had told us to prepare to lose them both. It makes me wonder even more about the bond between twins and I pray that Breleigh watches over her sister still today!
I am so grateful to Breleigh for her fight! I believe my blessing was that I did not have to lose her in uterine and that I know that we did everything possible to save her. I had one day of no worries, where I just got to enjoy being a mother of twins... She gave me that gift and I will be eternally grateful to her! I just pray she knows how much we love her and that she will always be in our hearts!
Mom (Robyn), Dad(Adrian), Eli, and Aira"