One of our most important goals is to help you create a medical plan of action and then to encourage and empower you to act upon this plan immediately. There is never a reason for anyone to hear that there is nothing that can be done. There is always something that can be done in every pregnancy. Below are guidelines to help you create your medical plan. You may check them off as you reach each one and of course add more to the list as you get further into the process. We are here to help you every step of the way. Remember, there are some excellent doctors and health professionals out there. They are there to help you. But, these babies are yours and this is your one chance to do all you can for them. No one is more dedicated and fueled to fight this disease more than you. Clear your mind, and know that your babies know that you are doing everything you can for them. If you can say in your heart that you have done everything you can for them, then we have done our biggest job. This is the peace that we wish for you. (Please read this completely).
Create a medical plan of action.
Talk with a representative of The Foundation for education on the syndrome, treatments, bed rest, diet, physician referrals, insurance, and other assistance the foundation may have available to you.
Contact other families that have gone through twin to twin transfusion syndrome and various treatment options that The Foundation have to offer. The TTTS Foundation runs several groups on Facebook. Please contact us so we can add you.
Contact other specialists who offer various treatments for twin to twin transfusion syndrome that The Foundation has to offer. Send them your ultrasound information. Add them to your medical team.
Get a second opinion from another specialist in your area.
Search the Internet for further information that might help you.
Contact your insurance company to begin the approval process for laser surgery even if you feel you will not have it done. You need to save time in case you make that decision in the near future.
Sit down together in a quiet place, hold hands and look into each other's eyes. Ask yourselves, "What decision is right for our babies? What decision can we live with for the rest of our lives? What decision will give us the peace... that we did all we could and there was nothing more?"
Listen to that inner voice inside, and trust it. The answers will come. We promise.
Once you have made a decision, then act upon it immediately. Have the top specialists for that treatment involved in your care so you know you are having the treatment performed correctly.
Have, at least, weekly ultrasounds from 16 weeks through delivery of your babies. Even if the warning signs for twin to twin transfusion syndrome have lessened, continue weekly ultrasounds. The ultrasounds are crucial to make sure the syndrome has not worsened or that further steps to help your babies can be taken if it has.
Create a backup plan. After you have decided what your initial plan of action for treatment will be after being diagnosed with twin to twin transfusion syndrome, create a backup plan. The backup plan should be thought of ahead of time as a plan of action if the first treatment is not working. If this choice is laser surgery, all the airfare, hotel, insurance, and contact with the laser surgeon should already be set in place so you can fly out within hours if need be. The Foundation has a Circle of Care Program where we can help with your travel arrangements. We are used to working in an emergency situation.
Create an extended plan. This plan should include a possible delivery date, will you deliver vaginally or by C-section, when to give the babies steroid shots, what are the warning signs of pre-term labor, can you have pre-term labor home monitoring, what happens if you reach the goal to deliver and things are going well, what are the signs that you need an emergency delivery, bed rest and diet education. Talk before your delivery about having your placenta analyzed by pathology. The Foundation has created a twin to twin transfusion syndrome Placental Analysis Protocol. This provides step by step instructions on how to analysis a placenta to confirm the syndrome and placental share. This information is crucial to medical research and to filling out our registry. It is how you will get your answers to why this has happened.
Visit the NICU unit and meet the neonatologist as an educational precaution.
Know the sex of your babies and name them. Being diagnosed with this disease throws parents into a medical world that no one ever talks about or is ever prepared for. Naming your babies is something that you can do that is nonmedical... something normal and natural in every pregnancy. It is something very special and meaningful and it will help you as you speak to them and share them with others.
Be honest with your friends and family members about how you want to share what is happening to you with them. Surround yourself only with people who give you strength, comfort, love, support and hope. It is OK to do this. You need to concentrate on each other now and your babies. It is a very personal time. Some people want a lot of people surrounding them, others do not. Both are OK. The more you can talk about what is happening will help you in the end. If you would like us to mail a packet to a family member or friend in order to help them understand twin to twin transfusion syndrome, just notify The Foundation.
When you cover all of these bases, you will find that the overwhelming feelings you had at the time of the diagnosis, will go away. You can then feel more in control and prepared and able to concentrate only on the things that are relevant to caring for you and your babies.
"Thank you again for all your support and prayers during this very difficult time. If it hadn't
been for your web page, I don't think I would have been alert to the symptoms of TTTS and so pushy with the doctors to get them to
test me. If we had waited even a day or two longer, the doctors suspect I would have lost the pregnancy. I thank you, and Katherine
and Caroline thank you, from the bottom of our hearts."
Andrea from Texas