Tuesday, September 21, 2010

A full set.

This is something I do talk alot about with moms who beat the odds.

I was talking to a mom who has the full set. She needed someone to listen and basically know that her thoughts are normal. But something stuck me as odd. She was trying to walk on eggshells. She tried not to upset me because my sons didn't survive.

This amazed me. When you finally have a end to a TTTS pregnancy, you have this moment that the dust settles and you'll see what your life will hold. When you have survivors, that time is filled on anxiousness (If that is a real word). You second guess all of your decisions. Wondering, will your children have a disability? Will their quality of life be sub-par to what your community sees? And then it hit me. She and her husband questioned their very lives together.

This is not something that the doctors really tell you during your pregnancy. I say this because you have only weeks, days, or even hours to make gut wrenching decisions. And sometimes the life long impact a parent might not see.

Her marriage is on the rocks now. She said her girls needed so much help, and that she couldn't just get a sitter that she stopped being a wife. The doctors don't tell you that . Now she has a perfectly normal 4 year old, and the other will be lucky if she could feed herself.

She will have to find a way to explain to one child that, she didn't cause her sister needing so much help. She is already taking on the futures weight of uncertainty now compounding all of her emotions. I know that not having them is hard. But, hearing her I at least have a final end. I just need to deal with my grief. She and all of the other mothers who have 2, will never get that. They deal w/ TTTS the rest of their lives in a totally different way.

This is something I never imagined. They have to pick up and move on and guess what curves TTTS might still throw at them.

I feel for them the same way they feel for me. They have to keep their face straight, and not wonder, for if their children see them second guessing their decisions. Their children could be effected by that.


  1. I think about this often. We were told that Wyatt (our angel & Donner twin) had white matter in his brain when they did his MRI. We were told they didn't know how severe his disabilities would be but that he wouldn't be at all like his brother. I didnt care I wanted them to do everything in their power to try and save him. They did everything they could but the effects of TTTS had already done way too much damage on his fragile body. He grew his wings on his 24th day of life. I miss him dearly everyday but I also feel some guilt in thinking about how different and challenging our lives would be.

  2. Dana echos my thoughts too Erin. We didn't have time...it wasn't on our side. We were diagnosed, admitted and had surgery for what had looked like mild stage 3 within 18 hours. But by that 18 hour mark our angel, Cole, was at severe stage 4 and during surgery they were able to tell us how severe the cord insertion was, how little share it looked like he had. After we lost him, the next day, we were pretty much told that the chances of him surviving were minimal and if he had the damage would have been severe. If we had have delivered they both would have died, if we had left it without surgery...same scenario. Even if we'd gotten a few more weeks in the chances of him surviving were low and of Cameron surviving to the degree of health that he has...very minimal. But that doesn't always stop the what ifs...the wanting. I wish it did.
    And seeing my survivor day after day... sometimes it is heartwrenching...I know exactly what I've lost, exactly what my angel looks like. And I know myself enough to know that it will take years before I don't worry about every health or development issue and wonder if it is because of the TTTS.
    So yes, Erin, you are right...there never really is an end.
    And yet I don't think I'd change it for anything...my miracle sons have taught me so much!

  3. This was posted on my facebook page. Thought it should be here:
    Lacey Hartnett-
    I cannot comment on your blog because i do not have an account set up on the requiring profiles. BUT i wanted to comment. I am a mom with twins that survived TTTS. However they were born early and we were told numerous times to expect the... worse if they even survived. So I did, and every day I feel blessed that they are here with me. My marriage is over because i was fulltime mom only. My boys suffered from asthma, RSV, Pneumonia, cholic and other complications as a results of the TTTS. I was exhausted and it took its toll on my marriage. My sons are 5 and in kindergarten. they are EXTREMELY bright and athletic. One is smaller than the other and the bigger one has heart valve issues. They ask why am i smaller and why is my heart broken. I answer as honestly as possible. MY sons are miracles. I know moms who have lost one or both. I even had a dr suggest that i terminate the donor to save the recipient. I suffered the 5 amnio's because i was denied the laser surgery by Dr. Quintero, due to kidney failing. I did whatever i had too. It cost me my husband. However, I have my beautiful children and I thank GOD every day for them, and the Dr.'s that helped me through that time. I am sorry for moms that have lost one or both twins. I know what you felt. I do not know the loss and i would try to be sensitive to that. I do know the helplessness, the betrayal of my body, the discomfort, the fear. I know it all. My end was different, but I hope with Erin's book and the foundation more moms will get aware, and more people will donate to help discover a cure for this disaster on a twin scale.