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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 Worse..
"Do not apply a cookie cutter approach to your treatment of ANY pregnancy -- especially important when dealing with a tricky, vile condition such as TTTS. Do not dismiss a mother's concerns of the advancing severity of TTTS with comments like: there's no need to worry about fluid imbalance between the two babies; or discrepancy in size is common in twin pregnancies. Do not use the same ultrasound protocol you'd use in so-called normal pregnancies or singleton pregnancies. Do not think that two weeks between scans is remotely sufficient. Do not blame oversights in medical care on the unpredictability of the condition. Do not reply to patient questions with rote answers instead of giving each question critical thought and individualizing your response to each unique situation. Do not let ego, hospital bureaucracy and politics or intellectual sloth delay or prevent a patient from getting specialized treatment elsewhere. Do not waste time until the condition is severe before making treatment plans. Do not allow a wait-and-see attitude replace playing it safe. Help patients get information instead of making them do all the legwork. Make time to review any research the patient takes the pains to uncover."
Wynne, Mother of twins, one passed away, Massachusetts

 

 

How My Doctor Made It Worse...
"I did not like it when my doctor did not diagnose my TTTS, acted like it could not happen so early in my pregnancy, did not maintain adequate ultrasounds of my survivor, did not warn me of the risks of twin pregnancies, treated the loss of my baby as a miscarriage and like it was not 'his problem', didn't organize support after the loss of my baby, and he was not up to date with current information on treatments for TTTS"
Kylie, Mother of twins, one baby passed away, Australia

 

 

How My Doctor Made It Worse...
I did not like it when --

1) My doctor chose to not inform me about TTTS out of a desire to not "Scare" me.

2) My doctor did not respect my intelligence enough to help and allow me to make informed choices about my care.

3) My doctor did not inform me of what a Perinatologist was or refer me to one after I was diagnosed with Monochorionic/Diamnionic Twins.

4) My doctor did not aggressively treat my severe anemia and told me to "do the best I could" taking prenatal vitamins I was allergic to instead of prescribing a different vitamin or telling me to try drinking 3 or 4 cans of Ensure a day in order to help boost my nutrition.

5) My doctor allowed me to go from 21 to 28 weeks without an ultrasound, knowing I had Monochorionic/Diamnionic Twins.

6) My doctor diagnosed pre-term labor and treated me with Terbutaline and Betamethasone approximately 4-5 days before my baby died without doing a Biophysical profile.

7) My doctor allowed me to be discharged from the hospital without getting at least a final, accurate heartbeat on both babies, let alone an ultrasound after being monitored for @ 7 hours for preterm labor without one. The last documented heartbeats were observed 4 hours before discharge.

8) My doctor did not tell me there was a Perinatologist available for "hands on" consult the entire 4 weeks I spent in the hospital on bedrest after one of my babies died.

9) My post 20 week, stillborn child, cannot be recognized by either a Birth or Death certificate, only a Fetal Death Report. I do not like it that ACOG has come out against legislation attempting to change this.
Cheryl, Mother of twins, one passed away, Virginia

 

 

How My Doctor Made It Worse...
"I think it's so important to listen to women when there are concerns. In my case, it might have helped to save our son. I "knew" that something wasn't quite right. When I voiced this concern, I was reassured with words, not with testing that would have shown that Aaron was indeed in distress. A week later, at my routine ultrasound, he was gone. I have regret for not being more vocal. Do not withhold or downplay important information. Be honest, sincere, and sensitive."
Lauren, Mother of twins, one baby passed away, Massachusetts

 

 

How My Doctor Made It Worse...
"I did not like it when my doctor told us, 'There is nothing that can be done.' I deserved the right to 'try' and save my babies. I was given only one option, deprived of knowing about the others, and was told that none of them worked. I have to live the rest of my life with my loss, I certainly deserved the right to have had a life with both of my babies. After the diagnosis, I was in such a state of shock that I became emotionally paralyzed. I needed my doctor to tell me they could make it and we would fight for them. I wanted to grab a hold of anything. I would have given my life to save my son. Please just give us the chance to try. They are our children. It is our life. We only get one chance and mine was stolen from me. I do not think it is asking too much to have the 'chance' to try. Give me the options and do it in an unbiased way. Leave out the 'I don't think it works' part and let me make that decision."
Mary, Mother of twins, one baby passed away, Ohio

 

 

How My Doctor Made It Worse...
"After my first daughter passed away, I soon ruptured with Tory. The resident on call did the ultrasound herself and said that she saw the second sac ruptured. She then cheerfully asked if we wanted to know the sex of that baby. This was not a time to be cheerful, especially after my first daughter had already passed away. I already knew they were girls, but she must not have read my chart! I was disappointed that I did not receive a card or something after both my girls passed away from the practice. The NICU doctor sent a lovely, simple vase of flowers and a card, and came to the funeral. After my delivery, I stayed up until 6 am with my daughters telling them I love them. A doctor from the practice, who did not know me, walked into my room and was very cold and condescending. The pain medications I was taking were not working and I couldn't sleep, as the pain kept waking me up. I mentioned this to him and he said, Low pain threshold, huh?" (imagine the snide tone). This comment, combined with my sorrow and pain was too much to bare. He never offered his sympathy."
Amy, Mother of twins, both passed away, California

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World Awareness Day - Dec. 7 2010

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