What does it mean to create a Medical Plan of Action?
This plan is for at-risk monochorionic pregnancies and those diagnosed with TTTS, including TAPS, SIUGR and TRAP
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).
How to start your medical plan of action.
- Talk with a representative of The TTTS Foundation for education, treatments, bed rest, diet, physician referrals, insurance, and other assistance the Foundation may have available to you. If you have no symptoms and are just pregnant with a monochorionic placenta, you can still follow this plan to empower yourself and be prepared in case a diagnosis is made later.
- Contact other families that have gone through TTTS, including TAPS, SIUGR and TRAP. The TTTS Foundation runs several groups on Facebook to connect families and to continue to help and support you online. Please contact us so we can add you to our private groups.
- Contact at least 3 laser centers who offer various treatments for TTTS, including TAPS, SIUGR and TRAP. Centers are listed in The TTTS Foundation’s Laser Center List which is updated periodically. A center listed is not an endorsement of The Foundation. We list questions that you should ask each center to help you make a good decision.
- Have your MFM send your records to all three centers so they know your name and can follow your ultrasound reports. Add them to your medical team. If one laser center says they cannot do the procedure, contact us and we will help you find another option. Never accept a ‘no’.
- Get the answers to The TTTS Foundation’s Most Important Questions and if diagnosed, know what stage your babies are in. We have developed these questions based on the staging of TTTS, including TAPS, SIUGR and TRAP and the answers are the same laser centers want to know.
- Knowing the answers empowers you to have productive conversations with specialist. Your imagination is always worse than the truth Remember, the truth shall set you free. Dealing with the facts will get you to treatment faster and you will understand why you are going in the first place.
- Get a second opinion from another specialist in your area. First, you must be in the care of a high risk MFM doctor. Second, you want to leave your appointments educated, uplifted and confident in your medical plan. If you don’t, a second or even third opinion can help make sure you are in the best care for your babies.
- 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 need to make that decision in the near future.
- Sit down with your family, 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. That is God talking to you. 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 weekly ultrasounds from 16 weeks through delivery of your babies with a MFM specialist when everything looks perfect in your pregnancy to look for the signs of TTTS. Make sure MCA dopplers are being done at each ultrasound to look for TAPS and measure the weights of the babies every other week to monitor for SIUGR. By 11 weeks gestation, a MFM should be able to diagnose or rule out TRAP.
- Once, any signs of TTTS, TAPS, SIUGR or TRAP are seen, you need to have ultrasounds 3 times a week if not every day or be admitted for 24 hour monitoring based on your situation. This may be the case when determining the best moment to deliver.
- If you have already received treatment or the symptoms have improved, never let your guard down and continue weekly ultrasounds. The ultrasounds are crucial to make sure the TTTS has not worsened or come back after improvement or that TAPS does not develop after laser or if there are other problems. And if there are, further steps to help your babies can be taken immediately.
What’s next — Create a backup plan.
- After you have decided what your initial plan of action is, 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 TTTS Foundation has a Circle of Care Program where families have donated to help the next family in great financial struggle. 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 supplementation or medication for nausea.
- Make plans with the pathology department of your hospital (before delivery) about having your placenta analyzed after birth. The Foundation has created The TTTS Foundation Placental Analysis Protocol. This provides step by step instructions on how to analysis a placenta to confirm the syndrome and placental share, including TAPS. This information is crucial for medical research. Even more important, is that this is how you will get your answers to why this has happened to you.
- Visit the NICU unit and meet the neonatologist as an educational precaution. It is always better to see someone else’s babies before you might see your own.
Advice from our Heart.
- 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 talk with a family member or friend in order to help them understand TTTS, including TAPS, SIUGR and TRAP, just notify us day or night.
- Send a prayer request to our prayers team. Hundreds of people around the world are ready to help you know you are not alone. God is with you and together there is strength in faith.
- Do not look too far into the future. Take this truly one minute at a time. Minutes turn into hours, and hour make another day. You do not have to be involved. The clock will tick without any help from you. It is OK to close your eyes and take a breath. You are strong without trying.
- This is a time in your life to let others help you. We know that is difficult for many, but this what life is truly all about. Your family and friends love you. Accepting their help will give you the time and even the quiet moments to take care of and make crucial decisions for your babies.
- 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.