Welcome to the TTTS Support Team
We support families who have received a diagnosis of Twin to Twin Transfusion Syndrome by creating connection, community, and awareness.
When we started the TTTS Suppport Team we started as a group of parents who wanted to offer support to the grieving parents of our community. Grief support is our foundation. We began by creating and offering free grief care packages. This program continues to be one of the core programs of the Team. We send packages to families world wide. There is no time limit to when a family can request a grief package, because there is no time limit to the grief families experience.
Two other foundational programs created by the Team include; Mother's Day and December Holiday card mailings to the mothers and families who have received our packages in the past.
Our newer programs include an awareness raising blog of TTTS stories as told by the families, a partnership with some of the top maternal fetal medicine surgeons in the United States, and new partnerships with other TTTS parent groups that focus on up to date medical information and parent advocate resources.
Look to 2019 to include another very exciting awareness project on our social media and more specialized support for another specific group of the TTTS community.
If you are interested in becoming a volunteer member of the Team please email us at TTTSSupportTeam@aol.com or message us on Facebook.
Christina and Piperlyne
PLEASE CLICK HERE to request a grief package.
Current Projects and Fundraisers
September is NICU Awareness Month
So many of our babies face NICU time after birth. Understanding the challenges our babies can face in the NICU is important. Here are some key things to remember if your family is facing NICU time.
You are an active, key team member of your baby's medical care.
- Ask questions if you don't understand.
- Don't be shy about taking notes or even recording conversations when talking about complex medical situations.
- Ask a trusted family member or friend to sit with you, or conference call with you when discussing medical diagnoses or making decisions with your baby's medical team.
Remember that this is healing time for the mothers too.
- Have open and honest conversations with your doctor when it comes to your own physical healing and honor your body's healing process.
- Honor your emotional experiences during this whole process. If you have a friend or family member who can focus their love and support on you, let them.
Mothers and Fathers both need support.
- Find NICU support groups to share your experiences with. Many larger hospitals have NICU parent support groups that they can help you connect with. There are also many online groups you can join via social media.
- If you find you need professional support be proactive in finding a mental health professional who can help you. The medical staff or social worker should have recommendations. Meeting with the hospital clergy or talking to your OB/GYN is also a good idea.
Time in the NICU is challenging for everyone involved, even in the best of situations. Depending on your baby's length of stay, challenges faced while there and any complications that may come up such as your baby's death in the NICU or receiving life altering diagnoses, a NICU experience can be traumatizing and cause post traumatic stress experiences. These are important to note and very real. If you find yourself wondering about how the trauma of the NICU might be effecting you, please see a professional to discuss your experience and get the support you need.
Whether our babies are NICU angels or NICU graduates we all know that they are our heroes. And all the families who face their baby's NICU stay are true warriors of love.
True Words Campaign
What is your True Word?
Hope - Fearless - Survivor
We have a number of originally created products available for purchase through Threadless. All designs are exclusive and made with love by a team of designers who have been working over the past few months to bring them to you. These are words of healing and hope, words to wear with pride, or to use as conversation starters. Words you can gift to friends and family.
Click here - to be taken to our boutique where you can shop all the True Words designs. All proceeds benefit the TTTS Support Team.