TTTS Awareness Day

Today is designated as International TTTS Awareness Day. TTTS is Twin-to-Twin Transfusion Syndrome. It is what took the life of our little baby Madison at 24 weeks 2 days gestation. We had never heard of this disease until we were diagnosed with it at 16 weeks pregnant. The disease only affects identical twins. It is devastating if not treated, and even sometimes when it is treated...sadly we are living proof of that.

Today I am sad. I am sad for us as parents. I am sad for Abigail, that she will never know her sister. I am sad for Madison, that I couldn't do more to save her. And I am sad for every family who has to deal with this awful diagnosis.

Tonight, there is a worldwide candlelight vigil and prayer. In the privacy of their own homes, participants will light candles in honor of all of the babies who have or will suffer from TTTS. The donor babies will have candles lit in their honor at 5:10pm (in all time zones), followed by the recipient babies at 5:15. Abby and I are going to participate. In 2 hours and 14 minutes we are going to light a candle for sweet little Madison. And 5 minutes later, we will light one for Abby as well.

The TTTS Foundation is a non-profit organization that helps families suffering from TTTS. They were incredibly helpful to us when we were diagnosed. We are forever grateful for the work that they do and like to support them as much as we can. If you would like to help too, you can click here to make a donation.

Here are some photos I have never shared before, but I post them today, in honor of my sweet angel.


A package ironically opened today, that came from ML, contained this little ornament (along with others), which already hangs on our Christmas tree. Thank you ML.


Madison's "birth certificate", made by one of the nurses.


The blanket and hat Madison wore when her Daddy and I held her, along with her hospital id bands.


A shelf in Abigail's nursery. The bears were given to us by the hospital. The white bear was a gift from Madison, to Daddy and me. The brown bear is from Madison to Abigail. I slept with that brown bear every night while I was in the hospital. The white keepsake box holds her blanket, hat and id bands. The little blue one in front of it holds a picture of her feet, as well as a cast of her footprints. The marble building block is Madison's urn. Her final resting place. Appropriately placed in the room she was meant to share with her sister.

Please. Donate if you can. Future families need our help.

Thank you.