The journey to our bionic cervix...
Warning: This post is very sensitive. It talks about lady parts and religion so if those topics are "hot topics" for you, you might want to skip this post ;) My hope in writing this is that this information will have the power to help other women become better educated in their choices for family planning after their preemie or loss.
After losing Grace and Wyatt, Matt and I spent months surviving. We worked on grieving, healing and finding the will to hope again. We spent painful months looking into surrogacy and were hopeful twice only to be ultimately devastated. These blows made me bitter, skeptical of others and also reconfirmed my dislike towards specific churches that create rules for members having no clout on what the bible ultimately says. Man made rules are ridiculous and absurd. I won't go into more detail here. Basically Matt and I like everyone else in this imperfect world are sinners. Who gives a shi*! We had people judge us for doing IVF, for looking into surrogacy, and for mourning too long or not long enough. I was hurt then, but now really don't care what anyone else thinks. Everyone sins, and according to the bible, if you believe in the bible no one sin is worse than another. I believe as humans we pick which sins we are ok with committing. It made me annoyed that someone would call IVF a sin but chose to take birth control, or vaccinate their children with vaccines that are made in a lab. End of rant...
Point of that soap box was to illustrate the road that brought us to our current state. To our bionic cervix!! After the surrogacy disappointments Matt and I were over "interviewing potential wombs for our babies." It was so emotionally draining and honestly after everything was said and done we were unsure if we really trusted someone enough to carry our baby. Sure I know if we had looked long and hard enough we may have found the perfect womb and womb owner to help us bring a baby home, but we were just drained at this point. I was depressed at the thought of never having children when Matt approached me one night and asked me to try one more time. He was so sweet and matter of fact. He pleaded and told me that he would support me each and every step of the way. He acknowledged that I was terrified, and knew that I was angry with my body for "failing me and the babies". He told me it would be different this time and we would start bed rest the day of transfer. Sure it would be a LONG 9 months, but it would be a blink of an eye in the big picture. I told him I would think about it and set off to become as educated as possible on every procedure that might bring us closer to carrying a baby.
During my quest for education I joined a wonderful yahoo group called Abbyloopers. It is an amazing site dedicated to families, who like us have suffered the loss of one or more children due to cervical weakness. It also reaches out to those who have premies due to cervical problems. It works to help educate the world on the procedures that are available but so rarely discussed by the medical community. The group has been amazing!!! I have learned so much and have met women on this journey who have walked similar paths as I have. Our bond will forever be unique and rare. It shocked me to learn just how many women have been affected by cervical weakness and loss. Its a silent disease and it is my new goal in life to educate as many people as possible. This includes the medical community. I cannot knowingly allow another baby dying or family suffering due to pure ignorance.
I began my research article reviews instantly. I became obsessed and looked into each paper written, procedure documented, and physician educated. I was amazed by the research results, yet the lack of adherance. I am not sure why I was surprised, I mean in this world we don't make money on healthy functioning bodies we rely on weak humans who we can keep sick to bring the bacon home. There isn't any money in health! I found a list of doctors who were educated in cerclage placement taking considerable notice to those doctors who placed Transabdominal Cerclages (TAC). The transabdominal cerclage is a procedure where they open the abdomen in a similar fashion to a c-section and place a strong fabric band around the top of the cervix, just under the uterus. It essentially keeps the cervix from effacing and dilating and is especially effective because it is placed at the very top of the cervix, eliminating any dilating force or funneling. I was surprised to find how few doctors in the US performed them, and then even fewer who have done more than 100 of them! I immediately scheduled a consult with Dr. Haney in Chicago. He is the pioneer of the TAC and has placed hundreds with 99% success of carrying a baby to term, not to viability, but a live baby that you would get to take home!!!
I was immediately impressed with Dr. Haney's office staff and their efficiency. I had a phone consult with him and it was beyond what I expected. I met a man who was genuine and cared about me and my babies. While other doctors were busy talking about my fetus, Dr. Haney was talking about my baby. He spent over an hour with me on the phone discussing my detailed health history, the treatment of my last pregnancy and then the treatment of future pregnancies. He explained the cervix, how it worked, and why it was important to pregnancies. He discussed infection and all the benefits/risks of each type of cerclage. I learned that there are many different types of cerclages that can be placed based on the situation. Dr. Haney assured me that with the proper cerclage we WOULD bring a live baby home. I was sobbing by the end of the consult. The mere thought of my body carrying a baby to term thrilled me, but also freaked me out. I wanted to trust him, but I was so afraid. He encouraged me to consult with a few more doctors who were experienced at placing cerclages and dealing with high risk patients. He gave me three more doctors names and phone numbers. What doctor does that? I mean he spent over an hour talking to me, then encouraged me to get a second and third opinion! Amazing!!!
I contacted two more doctors and was certain that a TAC would be our answer. I spoke to Matt about the procedure and asked how many miles we had saved up so I could fly to Chicago to have the TAC placed. We didn't care how much it cost, money was no factor. We wanted a family and this was a requirement in pushing forward on that quest. Before I booked my flight I was informed of a specialist in California who was experienced in placing the TAC. He had placed many and was very successful in his approach. I called the doctors office immediately to schedule a consult. I was informed that the doctor was out of the office but that he would call me back by the end of the week. I informed the nurse that I was hoping to get information on TAC placement, I wanted to discuss his thoughts and also his successes. I was on the phone 30 minutes later with him! Dr Winter was my local Dr. Haney. He spent an hour himself discussing the tac, he shared his success rate and also disclosed two times when the TAC had been unsuccessful. Such honesty. He asked to see me in person. I met with him the following day. He did an exam and found my cervix to be 2cm at the time. Normal cervical length is 5cm!!! He asked me to get a second opinion, and of course I agreed. I went directly upstairs to a specialist office. This doctor was amazing too! I was in awe at how many good doctors had fallen into my path. Dr Lagrew a perinatologist did an exam on me and agreed that a TAC would be my best option at carrying a baby to term. He told me that he would speak with Dr. Winter and they would be in touch with me. I hadn't even exited the freeway on my way home when the hospital called to confirm my surgery the following Monday!!! Um yes!!!! Dr. Winter called me minutes after to tell me they would place the TAC and that he would be in touch with my insurance. I was scheduled for a pre-op visit the next day....
The decision to have the TAC placed was not an easy decision. It was made after much research and many consults. I met with a specialist in the same group as the specialists we saw during our pregnancy with Grace and Wyatt and they suggested a "wait and see" approach to a future pregnancy, while another doctor spoke of a Transvaginal Cerclage (TVC) at 12 weeks into the pregnancy. We immediately recoiled at the idea of the "wait and see" approach. We had experienced enough waiting and seeing with Grace and Wyatt and were not going to be guinea pigs again. I couldn't live through a repeat of our last pregnancy. We considered the TVC, and believe that TVC can work for many women, just not us. We experienced funneling with our last pregnancy and I had doubts of my cervix maintaining its integrity through the funneling. With the TVC we would most certainly be anxious all the time causing unnecessary angst. We would also be required to resume hospital bedrest, and many women have torn through the stitch that is sewn through the cervix, causing further devastation to the cervix and possibly future pregnancies. Aside from all of this there were more reasons we backed away from the TVC. TVC success rates were not a "success" in our eyes. Also with a TVC you are required to undergo surgery with each pregnancy, increasing infection risk, and insult to the pregnancy. SCARY!!!
Before my research not one OB or perinatologist mentioned a TAC none the less supported the procedure. I had to educate myself and bring it up in conversation with them. There are only a handful of doctors in the US that do these procedures regularly. Unfortunately this leads to a lack of statistics and awareness among the obstetrics and patient community.
I was completely shocked when I read the statistics - A TAC has a success rate of over 95%** for bringing pregnancies to term (37 weeks gestation). A preventative (as opposed to a rescue) TVC has less than a 75%** success rate of bringing a pregnancy to viability (24 weeks). Most obstetricians and Maternal Fetal Medicine (MFM) specialists view the TAC as an extreme measure saved for people that have had 3 or more 2nd trimester losses. The all too common complacency to intervene earlier in the wake of of 2nd trimester loss or extreme prematurity when the cause is clearly cervical incompetence is completely baffling and appalling to me. No one should have to lose 3 or more babies to at least be presented with all of the options for intervention. It should be an option, and no woman or family for that matter deserves to suffer such devastation repeatedly.
The TAC is certainly more invasive than the other options. It is an open abdominal surgery (but it can also be done laproscopically). The TAC eliminates the possibility for delivering a baby vaginally. For me this wasn't an issue since I had delivered Grace and Wyatt via C-section. The TAC is permanent and is only placed one time. It is strong and because it is wrapped around the cervix has no potential to rip through it. This fact along with the statistics led us to chose the TAC for our family. The TAC doesn't mean that we wont worry every day of our pregnancy, it doesn't make it easier, but it does insure us that one of the problems we faced would be eliminated. We would still battle pre-term labor but that was another issue all together.
TAC placement along with recovery will be followed up in a future blog. This one has gotten lengthy and its main purpose was to provide education on the topic of TAC. I hope it leads families to help before they experience more losses. Please help me spread the word so that other women can find the hope to try again!!
Xx
** These statistics were quoted to me by my physician.
Warning: This post is very sensitive. It talks about lady parts and religion so if those topics are "hot topics" for you, you might want to skip this post ;) My hope in writing this is that this information will have the power to help other women become better educated in their choices for family planning after their preemie or loss.
After losing Grace an
Point of that soap box was to illustrate the road that brought us to our current state. To our bionic cervix!! After the surrogacy disappointments Matt and I were over "interviewing potential wombs for our babies." It was so emotionally draining and honestly after everything was said and done we were unsure if we really trusted someone enough to carry our baby. Sure I know if we had looked long and hard enough we may have found the perfect womb and womb owner to help us bring a baby home, but we were just drained at this point. I was depressed at the thought of never having children when Matt approached me one night and asked me to try one more time. He was so sweet and matter of fact. He pleaded and told me that he would support me each and every step of the way. He acknowledged that I was terrified, and knew that I was angry with my body for "failing me and the babies". He told me it would be different this time and we would start bed rest the day of transfer. Sure it would be a LONG 9 months, but it would be a blink of an eye in the big picture. I told him I would think about it and set off to become as educated as possible on every procedure that might bring us closer to carrying a baby.
During my quest for education I joined a wonderful yahoo group called Abbyloopers. It is an amazing site dedicated to families, who like us have suffered the loss of one or more children due to cervical weakness. It also reaches out to those who have premies due to cervical problems. It works to help educate the world on the procedures that are available but so rarely discussed by the medical community. The group has been amazing!!! I have learned so much and have met women on this journey who have walked similar paths as I have. Our bond will forever be unique and rare. It shocked me to learn just how many women have been affected by cervical weakness and loss. Its a silent disease and it is my new goal in life to educate as many people as possible. This includes the medical community. I cannot knowingly allow another baby dying or family suffering due to pure ignorance.
I began my research article reviews instantly. I became obsessed and looked into each paper written, procedure documented, and physician educated. I was amazed by the research results, yet the lack of adherance. I am not sure why I was surprised, I mean in this world we don't make money on healthy functioning bodies we rely on weak humans who we can keep sick to bring the bacon home. There isn't any money in health! I found a list of doctors who were educated in cerclage placement taking considerable notice to those doctors who placed Transabdominal Cerclages (TAC). The transabdominal cerclage is a procedure where they open the abdomen in a similar fashion to a c-section and place a strong fabric band around the top of the cervix, just under the uterus. It essentially keeps the cervix from effacing and dilating and is especially effective because it is placed at the very top of the cervix, eliminating any dilating force or funneling. I was surprised to find how few doctors in the US performed them, and then even fewer who have done more than 100 of them! I immediately scheduled a consult with Dr. Haney in Chicago. He is the pioneer of the TAC and has placed hundreds with 99% success of carrying a baby to term, not to viability, but a live baby that you would get to take home!!!
I was immediately impressed with Dr. Haney's office staff and their efficiency. I had a phone consult with him and it was beyond what I expected. I met a man who was genuine and cared about me and my babies. While other doctors were busy talking about my fetus, Dr. Haney was talking about my baby. He spent over an hour with me on the phone discussing my detailed health history, the treatment of my last pregnancy and then the treatment of future pregnancies. He explained the cervix, how it worked, and why it was important to pregnancies. He discussed infection and all the benefits/risks of each type of cerclage. I learned that there are many different types of cerclages that can be placed based on the situation. Dr. Haney assured me that with the proper cerclage we WOULD bring a live baby home. I was sobbing by the end of the consult. The mere thought of my body carrying a baby to term thrilled me, but also freaked me out. I wanted to trust him, but I was so afraid. He encouraged me to consult with a few more doctors who were experienced at placing cerclages and dealing with high risk patients. He gave me three more doctors names and phone numbers. What doctor does that? I mean he spent over an hour talking to me, then encouraged me to get a second and third opinion! Amazing!!!
I contacted two more doctors and was certain that a TAC would be our answer. I spoke to Matt about the procedure and asked how many miles we had saved up so I could fly to Chicago to have the TAC placed. We didn't care how much it cost, money was no factor. We wanted a family and this was a requirement in pushing forward on that quest. Before I booked my flight I was informed of a specialist in California who was experienced in placing the TAC. He had placed many and was very successful in his approach. I called the doctors office immediately to schedule a consult. I was informed that the doctor was out of the office but that he would call me back by the end of the week. I informed the nurse that I was hoping to get information on TAC placement, I wanted to discuss his thoughts and also his successes. I was on the phone 30 minutes later with him! Dr Winter was my local Dr. Haney. He spent an hour himself discussing the tac, he shared his success rate and also disclosed two times when the TAC had been unsuccessful. Such honesty. He asked to see me in person. I met with him the following day. He did an exam and found my cervix to be 2cm at the time. Normal cervical length is 5cm!!! He asked me to get a second opinion, and of course I agreed. I went directly upstairs to a specialist office. This doctor was amazing too! I was in awe at how many good doctors had fallen into my path. Dr Lagrew a perinatologist did an exam on me and agreed that a TAC would be my best option at carrying a baby to term. He told me that he would speak with Dr. Winter and they would be in touch with me. I hadn't even exited the freeway on my way home when the hospital called to confirm my surgery the following Monday!!! Um yes!!!! Dr. Winter called me minutes after to tell me they would place the TAC and that he would be in touch with my insurance. I was scheduled for a pre-op visit the next day....
The decision to have the TAC placed was not an easy decision. It was made after much research and many consults. I met with a specialist in the same group as the specialists we saw during our pregnancy with Grace and Wyatt and they suggested a "wait and see" approach to a future pregnancy, while another doctor spoke of a Transvaginal Cerclage (TVC) at 12 weeks into the pregnancy. We immediately recoiled at the idea of the "wait and see" approach. We had experienced enough waiting and seeing with Grace and Wyatt and were not going to be guinea pigs again. I couldn't live through a repeat of our last pregnancy. We considered the TVC, and believe that TVC can work for many women, just not us. We experienced funneling with our last pregnancy and I had doubts of my cervix maintaining its integrity through the funneling. With the TVC we would most certainly be anxious all the time causing unnecessary angst. We would also be required to resume hospital bedrest, and many women have torn through the stitch that is sewn through the cervix, causing further devastation to the cervix and possibly future pregnancies. Aside from all of this there were more reasons we backed away from the TVC. TVC success rates were not a "success" in our eyes. Also with a TVC you are required to undergo surgery with each pregnancy, increasing infection risk, and insult to the pregnancy. SCARY!!!
Before my research not one OB or perinatologist mentioned a TAC none the less supported the procedure. I had to educate myself and bring it up in conversation with them. There are only a handful of doctors in the US that do these procedures regularly. Unfortunately this leads to a lack of statistics and awareness among the obstetrics and patient community.
I was completely shocked when I read the statistics - A TAC has a success rate of over 95%** for bringing pregnancies to term (37 weeks gestation). A preventative (as opposed to a rescue) TVC has less than a 75%** success rate of bringing a pregnancy to viability (24 weeks). Most obstetricians and Maternal Fetal Medicine (MFM) specialists view the TAC as an extreme measure saved for people that have had 3 or more 2nd trimester losses. The all too common complacency to intervene earlier in the wake of of 2nd trimester loss or extreme prematurity when the cause is clearly cervical incompetence is completely baffling and appalling to me. No one should have to lose 3 or more babies to at least be presented with all of the options for intervention. It should be an option, and no woman or family for that matter deserves to suffer such devastation repeatedly.
The TAC is certainly more invasive than the other options. It is an open abdominal surgery (but it can also be done laproscopically). The TAC eliminates the possibility for delivering a baby vaginally. For me this wasn't an issue since I had delivered Grace and Wyatt via C-section. The TAC is permanent and is only placed one time. It is strong and because it is wrapped around the cervix has no potential to rip through it. This fact along with the statistics led us to chose the TAC for our family. The TAC doesn't mean that we wont worry every day of our pregnancy, it doesn't make it easier, but it does insure us that one of the problems we faced would be eliminated. We would still battle pre-term labor but that was another issue all together.
TAC placement along with recovery will be followed up in a future blog. This one has gotten lengthy and its main purpose was to provide education on the topic of TAC. I hope it leads families to help before they experience more losses. Please help me spread the word so that other women can find the hope to try again!!
Xx
** These statistics were quoted to me by my physician.
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