Dear Doctors, Nurses and Sonographers,
This book has been adapted from helping parents, to helping you, those professionals that come into contact with a diagnosed mother, or a mother who has the possibility of being diagnosed, with twin to twin transfusion syndrome. Our hope is that this material will help you provide emotional and educational support to families that you have to give such devastating news to.
We want to stress that in the 14 years that we have been helping diagnosed families, now approximately 40 families a month, it is apparent that parents are most helped in their state of shock by simply being provided with the 'opportunity' to save their babies. They can't try to save their babies if they do not have all the education about the specifics of their pregnancy and where exactly they are in the diagnosis of the syndrome. We encourage you to use the enclosed questionnaire in letting them understand the important measurements that will enable them to see if the syndrome is mild, severe or somewhere in the middle.
When you diagnose a mother, we encourage you not to use vague words such as 'too much or too little fluid' but replace those words with the specific measurements of the pregnancy that can help them create a solid plan of action. They especially do not want to hear the about the "wait and see' approach. Parents deal with numbers, options, plans, and backup plans. I have yet to speak to a mother or father, who cried at the start of a phone conversation with me, that did not end the conversation with tremendous hope and empowerment. This was achieved once they learned what questions to ask their doctors and what the answers might mean for their babies. The way they got there was by narrowing down the huge diagnosis of twin to twin transfusion syndrome to only what is relevant to 'their' placenta and 'their' babies. Every pregnancy is unique with its placental share and the number and direction of flow of the connections that make the syndrome. They need to know that what happened to one family is not necessarily going to happen to them. With the Internet, the description of TTTS has become too huge and overwhelming. Narrow down to the specifics, and you will save time and energy helping your parents fight this problem.
Parents need to be the ones that make the ultimate decisions of caring for their babies. To help them, be sure to tell them that they are the best parents in the world and that you know they will make the best decisions for their children. Tell them that you know how much they love their babies and that their babies love them back with all their heart. Tell them, they will know how best to care for their babies when they start to feel a sense of peace toward a particular option.
The syndrome is unpredictable. But, we have seen babies make it that would have been terminated. We have even seen the symptoms go away from one appointment to the next. Parents know there are risks to their babies, but encourage them by letting them know there is hope and that their babies can live and be healthy. Tell them their babies are so very special and that they just need 'extra special care.' These words really do help them psychologically. If you advise in such a compassionate manner, your parents will walk out of your office devastated and in shock, but not crushed and paralyzed. In the end, they will know in their heart that they did everything they could for their babies after they have covered all the options in an unbiased way. They will know that they looked into every treatment. Because of this, they will be able to live with what ever decisions they make. Not only will the parents hopefully have both of their children to cherish forever, but if they don't, marriages will be saved and souls will have peace.
Lastly, our most important message is that we strongly advocate that once a monochorionic placenta is determined, weekly ultrasounds from 16 weeks through delivery is crucial even when a diagnosis of TTTS has NOT been made. Not only will the frequency help with the parents' emotional state, but it is crucial to look for problems with placental share and lack of growth in the smaller baby as well as the signs of the syndrome. Anything over one week is simply too long. The key is to create a plan of action with backup plans and to see the patient frequently.
The Twin to Twin Transfusion Syndrome Foundation helps families full-circle through the diagnosis of TTTS to the delivery of their babies. We have a 'Circle of Care' group of sponsors that enable us to financially help parents travel to get laser surgery. We help them if their babies go into the NICU, or if they need special needs and/or bereavement support. We specialize our services to families diagnosed with TTTS so we can give them the best possible care and surround them with others who have 'been there.'
Thank you for letting your families know about the Foundation. Please let them go home with one of our brochures so we can immediately overnight to them the 'parent version' of this TTTS book. God bless you in all the work that you do to save babies and thank you for your time.
Mary Slaman-Forsythe, Founder and President
The Twin to Twin Transfusion Syndrome Foundation