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Quotes from Mothers on the Care from their Doctors During a Pregnancy with Twin to Twin Transfusion Syndrome

How My Doctor Made it Better...
"I liked it when my doctor treated me like an intelligent person who had just suffered the death of her three children. I liked it when my doctor gave me options for my babies' birth, then let me decide. I liked it when my doctor respected my opinions and wishes. I liked it when my doctor didn't try to treat my experience like it didn't happen or wasn't important, and when he didn't try to 'pass the buck'. I liked it when my doctor called my sons by their names. I liked it when my
doctor came to my babies' funeral"
Mom of quadruplets, three passed away, Australia



How My Doctor Made it Better...
"I liked it when my doctor:

1) Treated me like a person, not a problem.

2) Respected my right to information about my condition, and ALL available options for treatment.

3) Did not assume that because his practice had not personally cared for a mom whose twin passed away in-utero from TTTS before, it isn't likely to happen.

4) Did not treat me like property he did not wish to "share" with physicians outside their practice.

5) Respected and conscientiously reviewed new information I brought in regarding my condition.

6) Did not take personally, or be annoyed by, vigorous questioning.

7) Understand that he is the EMPLOYEE of the patient, who is paying them to inform and treat the condition, not to make decisions for them unless specifically given permission to."
Cheryl, Mother of Twins, one passed away, Virginia



How My Doctor Made it Better...
"I liked it when my doctor took the time to meet with my husband and I in his office after each appointment. There were days when I was scheduled for ultrasounds, NST's, and check-ups which took hours. I was not allowed to leave until I met with him afterwards and discussed his findings for that day. Not having to wait until the next appointment for findings relieved an incredible amount of stress and worry. Anyone that has been diagnosed with TTTS can tell you that the mental stress is almost unbearable. Knowing I had an honest and caring doctor who would update me, good or bad, at every meeting helped me trust his judgment and relieved stress.

Another thing I liked about my doctor was that he was accessible. I had his pager number, phone number, fax, and e-mail address. At every appointment he reiterated that if I felt like something was wrong, not to hesitate to page him, even when he was on leave. If I had a general question that did not need to be answered right away, I could e-mail him and he would generally get back to me within 3 days. I really thought that was smart because that freed up his phone time for more important calls. It was also less frustrating for me. At each appointment I had to absorb so much new information. It never failed, I always forgot to ask something. Meanwhile, my doctor had an incredibly large amount of complicated pregnancies to deal and probably didn't need me to call him every five minutes with new questions. I feel that e-mail eliminated a lot of frustration on both ends and really allowed my doctor to stay involved and available, without being annoyed.

There was an occasion that I just showed up at clinic without an appointment because I could not feel Baby B kick. It turned out that my doctor did not even have clinic that day. I happened to pass him in the hall. As soon as he saw me, he asked what was wrong. He immediately stopped what he was doing and performed and ultrasound on me himself. I will never forget his expression "Thank God Baby B has a heart beat." I believe that he was sincerely as relieved as I was. Afterwards we went into his office, and had another discussion of what was going on. The first words out his mouth were "You did the right thing by coming here." I think doctors sometimes forget what kind of image people hold of them. If my doctor would not have taken the time to make me feel truly comfortable with him, I may have been too scared or thought that I was being too much of an inconvenience to go in and have my babies checked out. I currently am helping two local mothers that have either been diagnosed or waiting for their next ultrasound to find out if they will be diagnosed with TTTS. Both are also hesitant to voice their concerns. Luckily for them they are now both under the care of the same doctor I had. I believe that because of our doctor's direct yet caring and available attitude, these women will not be afraid to seek the attention and knowledge that they need to get through their pregnancies.

My doctor told me if there was any more information or options of treatment that I found on my own, I should share it with him. After I received the educational package for parents from Mary Slaman-Forsythe, Founder and President of the TTTS Foundation and a mother who had TTTS, I requested that she send a package to him as well. I know he was very impressed with the book and the Foundations knowledge. He now gives all his patients booklets from the Foundation. I hope you will acknowledge the Foundation's findings and research as well."
Michelle, Mom of two healthy twins, Virginia



How My Doctor Made it Better
Even though they had shortfalls, I have fond feelings toward the doctor and midwife who were involved in my care. I respect them for admitting when they did not know something. They were honest about the need for input from other specialists. We were sent to a perinatologist and two separate high-risk OB/GYN's who both did separate ultrasounds. We gathered and were given all the available information so that my husband and I could be an active part of the decisions made. After the loss of our son, I felt as though it was truly a team approach to do decide what was best for our survivor. When my son was in the NICU, my doctor stopped in person and called the NICU often to check up on his progress. He called me a week after I returned home after the delivery. It helped me to feel that I had his support and sincere concern.

Losses are individual. A mother who has lost her child/children is still a mother. Our angel children are held so dearly in our hearts. Call them by the names we give. Know that raising a surviving twin is a unique challenge with mixed emotions. Our lives have been changed forever. We will never forget our experiences or our babies. One of the best questions that my doctor asked me after we lost Aaron was, "Is there anything that I can do to help you in anyway?" Thank you for caring enough to read this book.
Lauren, mom of twins, one baby passed away, Massachusetts

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Learn about TAPS- MUST do MCA dopplers on all pregnancies

A form of TTTS, TAPS can occur after laser surgery or during a monochorionic pregnancy with no signs of TTTS or problems.
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Updated List of Questions

Questions to Ask at Every Ultrasound. Ultrasounds Must Be Weekly Starting at 16 Weeks.
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World Awareness Day - Dec. 7 2010

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