A DIAGNOSIS IS MADE
We are here to provide you with educational, emotional, and financial support to help in understanding twin to twin transfusion syndrome and the treatment options available. Once you choose your medical plan and this includes laser surgery, we have a Circle of Care group of airlines, hotels, private donors and Foundation funds that we may be able to use to help you. Support and education is also provided for you through our world wide web page, over the phone, connections with other parents and doctors, personal visits and our educational packet . After your initial contact with The Foundation, a mother who has already been through twin to twin transfusion syndrome will be your support person. She will stay in touch with you every month or more frequently if you would like. As stated earlier in this packet, our biggest goal is to help you create a medical plan of action, and then to act upon it. We are here to help take stress away from you by already having the research done for you. We also don’t want you to worry about insurance problems or funds to travel for treatment. We want you to simply concentrate on your babies and will do all we can to help you do so.
Our fight is for all of your babies to live. We share our tears with you if you experience the loss of one, both or all of your babies from twin to twin transfusion syndrome. We know there are no words to describe our sadness if this occurs. We offer to you others mothers to whom you may share your babies with who have also experienced this same sorrow. This is provided if you have experienced a loss and are still pregnant, the loss is at birth, in the NICU or after you have brought your babies home. We also provide bereavement support through special care packets, personal visits when feasible, and on our web page. Our Compassionate Deliveries Program helps parents plan for their time with their babies after they are born to help gather keepsakes. Trained volunteers are available to comfort you during this time and take loving photographs and video of your family for you to always treasure. The sense of peace that especially mothers feel in their lifetime after a loss is greatly determined by whether or not she held her babies together regardless of outcome, and has keepsakes to hold onto. We educate medical professionals to appreciate the bond of twins regardless of loss so they can better provide compassion during a delivery with a loss. The status of twins or triplets should never be taken away. You will always be the parents of twins or triplets.
We have a special needs coordinator who helps families having been through twin to twin transfusion syndrome who may have questions about the future health of their children. We provide families with special needs education, emotional support, and guidance for financial aid for their babies affected by cerebral palsy and other neurological, developmental and physical disabilities. A special needs packet, parent to parent connections, and phone support are made available to the family based on their specific area of concern and the severity of the disability. Mothers available to provide support to you have experienced a pregnancy with twin to twin transfusion syndrome and have children with special needs.
If your babies need the special care of the neonatal intensive care unit, please call us and we will send you a packet of information. The packet will help you understand how this special unit works and how you can best help your babies during their stay. We can also provide you with other parents who have been through a twin to twin transfusion syndrome pregnancy and experienced the NICU. You will have emotional support from others who have “been there” and the education to understand various hurdles you babies may face during their stay.
INTERNATIONAL TTTS REGISTRY AND TTTS RESEARCH
The Twin to Twin Transfusion Syndrome Foundation has begun the first registry of twin to twin transfusion syndrome pregnancies in the world. Our goal is to soon start one for the babies after birth and through their lifetime. This research is very important to gather crucial placental and pregnancy information that might help link pregnancies and find answers to twin to twin transfusion syndrome and how to treat it. By following children after birth, we can track the future health of the babies. We also support research being made by specialists devoted to ending the suffering brought by this disease. We recently purchased a new laser scope for Dr. Julian De Lia who pioneered laser surgery. The scope was made in Germany and is called the De Lia scope. The scope will be able to clean amnionic fluid during the operation if the amnionic fluid becomes cloudy or bloody. Families have been turned away from this procedure because a previous amniocentesis prior to surgery created this murkiness. Now, this will no longer happen. We have also developed a placental protocol to correctly analyze a placenta for twin to twin transfusion syndrome. This also is the first and only in the world.
PUBLIC EDUCATION AND AWARENESS
The Twin to Twin Transfusion Syndrome Foundation attends national conventions to increase awareness of twin to twin transfusion syndrome and the Foundation. The organization believes in building relationships with doctors, nurses and other caregivers across the country and abroad to increase referrals to the organization and help more families in need. We also want to continue to educate the medical community. Many still are not updated on treatments for twin to twin transfusion syndrome or have a clear understanding of the high risk involved in a pregnancy with a single placenta. Twin to twin transfusion syndrome is always life-threatening to the babies and can be to the mother if a loss of one baby occurs (although this risk is very low). We fight insurance companies who refuse to pay for treatments to twin to twin transfusion syndrome, especially laser surgery. We have succeeded in reversing decisions. We also are a support for lawyers who are taking cases to trial regarding twin to twin transfusion syndrome medical malpractice.