TAC Surgery No more need 4pain/loss
Donation protected
June 28th, 2014 was one of the best days of my life...I finally married my best friend and we were going to start our lives together after 9 years. 2 weeks later we found out that we were expecting our little blessing (our first child). We were absolutely ecstatic and overwhelmed with joy. We were nervous and excited for the what was ahead. Our baby girl was expected to arrive March 2015.
On November 27th 2014 (Thanksgiving Day) I was admitted to the hospital at 22 weeks 6 days gestation. I was told that my cervix was open and my bag was bulging out. They said, "I am very sorry but it looks like you are going to deliver very soon, and your baby is too young to survive." We could not believe this was happening to us, our baby and I were healthy; she had a strong heatbeat, kept kicking me and moving around so full of life. They wanted to try to see if they could keep the baby inside as long as possible, so I was placed in a trendelenburg position (head down, legs up), to try to keep gravity from pulling the bag out more. I spent a week at the hospital on full bed rest in this position, trying everything I could to keep my baby inside.
Unfortunately because the bag was exposed I caught an infection, and had very high fever. At this point there was no turning back, the baby had to come out; they tried to find her heartbeat for more than 30 minutes but there was nothing they could do our baby girl had passed away at 24 weeks 1 day due to an infection. I was induced and I delivered her naturally. On December 6th, 2014, Karisma Normandy Rubio was born at 6:19pm, she weighed lb 7 oz, and was 12 inches long, she was absolutely perfect! We held her, prayed with her and said our goodbyes. The worst day of my life was thus far the day we left the hospital without her...this feeling I pray no other mom has to ever endure.
We wanted answers! Why did this happen? What went wrong? My cervix opened prematurely, but why? I was told I have an incompetent/short cervix. There is no way of knowing that my cervix is "weak" until pregnancy, and it usually won't be diagnosed until multiple 2nd trimester losses (3 or more). My doctors told me that for future pregnancies I would have a "stitch" in my cervix placed at 11-13 weeks of pregnancy. I couldn't help but feel that it was my fault, I should've noticed symptoms, I should’ve done something. In my eyes I had failed as a mom...but in reality there was nothing anyone could've done. My only consolation was knowing that there was something I could do in the future so this won’t happen again.
After having to say goodbye AGAIN to our baby when they cremated her, we finally brought her home with us in her teddy bear urn.
I began my research on the “stitch.” I found that there are different stitches, and two different ways of placing it. One is placed vaginally (TVC) and another placed abdominally (TAC). There are 3 different stitches placed vaginally (McDonald, Shirodkar & cervicoisthmic). I was told that in my case I would have a preventive TVC, and monitored more closely by a perinatologist (high risk pregnancy doctor). The TVC will be placed at 13 weeks gestation and I would be given an epidural during the procedure. I would be on bed rest for a few weeks and hope that the stitch will hold until the baby is full term. I was told that a TAC would not be placed because “it won’t be approved until I have multiple losses (more than 3).” The TAC is the most successful cerclage with less bed rest and it is placed permanently. It is placed as an outpatient surgery, through an incision in the abdomen, and can be done pre-pregnancy or during pregnancy. Most doctors believe it is too invasive and an overkill; mainly because they don’t know how to treat it. There are not many doctors who konw how to place the TAC. Most insurance companies don't cover TACs until you've had multiple losses and/or a failed TVC. This is ridiculous!!!! How can you expect someone to go through this pain multiple times until something is FINALLY done!?
During my research I came across some doctors who are experts in the TAC. I wanted advice directly from them. One doctor in particular in Chicago took the time to have a 1-hour phone consultation with my husband and I. He was very descriptive, empathetic and patient with us. He explained the options we had, including a more statistically successful TVC known as a TVCIC (cervicoisthmic cerclage). The TVCIC is indeed more successful than the other TVCs but still not as successful as a TAC as he explained. The TVCIC is not permanent unless you want it to, you can get it off before delivery and try for a normal vaginal birth. However not many doctors know how to properly place a TVCIC, instead they say they placed a TVCIC when they only placed a normal TVC. Many women who have a TVC, don't go full term, they have many complications around the same time they did in their previous pregnancies. I've learned of stories from mother's who have had a failed TVC and ultimately ended up getting a TAC after 2 or more losses. These stories are hard to comprehend, because their losses are unecessary. There are women who have had successful pregnancies with the TVC in place, but with more restrictions and complications during their pregnancy; and still didn't make it full term.
My husband and I discussed the different types of cerclages, and we both agreed that we don't want to go through what we did again, we simply don't want to take the risk; so we wanted to proceed with getting a pre-pregnancy TAC. However, I found that there are no doctors in our area that perform the TAC. The Doctor in from Chicago is an expert in this procedure, and his patients have nothing but good things to say about him, such as how grateful they are for their healthy babies. Normally a surgery like this will cost more that $25,000.00 plus hospital costs. The Doctor in Chicago is trying his best to help us out, because he wants us to have a healthy baby that we so desperately want (perhaps because he felt our pain over the phone). He agreed to do the surgery for us for $7,000.00 if our insurance wouldn't cover it (only charging us the surgical room/equipment and anesthesiologis). He also offered to call our insurance directly and explain the reason why he recommends I get it done, in the appeal process. He has tried to do everything he could to help us. I have tried to find a way to get the insurance to cover it, but they keep denying it because I have an HMO. They won't pay for anything more than 30 miles away. Even after I found a supportive OB/GYN to send a recommendation for referral/authorization to my medical group. Which now leaves us stuck trying to figure out a way to pay for it out of pocket.
I have never asked for help involving money from people. Maybe because of my pride, or because we thankfully never needed to. My parents and husband don't want me to ask for help, and are trying to figure out a way to come up with the money. But I know that despite how hard they try they won't be able to come up with the money by the surgery date. Which is why, I now humbly ask my friends and family for any help they can provide (anything helps). The Doctor in Chicago has made it possible to perform the surgery for us on March 21st, 2015 (ironically a week before what would have been Karisma's due date).
I thank everyone for taking the time to read our story, and for helping out with whatever you can. I hope that one day I will be able to return the favor in some form.
Before this happened to me, I didn't know about incompetent/short cervix. I had no idea that so many perfectly healthy women suffer from this. I am determined to become and advocate to spread awarenes of what an incompetent/short cervix is and to spread knowledge about the TAC and TVC, in order for people to make their own decisions, not what the insurance companies/doctors decide for them! People need to know that this does happen and insurances need to understand that they need to cover these procedures! It's time to stop playing with the lives of these healthy babies and their unconsolable mothers!
On November 27th 2014 (Thanksgiving Day) I was admitted to the hospital at 22 weeks 6 days gestation. I was told that my cervix was open and my bag was bulging out. They said, "I am very sorry but it looks like you are going to deliver very soon, and your baby is too young to survive." We could not believe this was happening to us, our baby and I were healthy; she had a strong heatbeat, kept kicking me and moving around so full of life. They wanted to try to see if they could keep the baby inside as long as possible, so I was placed in a trendelenburg position (head down, legs up), to try to keep gravity from pulling the bag out more. I spent a week at the hospital on full bed rest in this position, trying everything I could to keep my baby inside.
Unfortunately because the bag was exposed I caught an infection, and had very high fever. At this point there was no turning back, the baby had to come out; they tried to find her heartbeat for more than 30 minutes but there was nothing they could do our baby girl had passed away at 24 weeks 1 day due to an infection. I was induced and I delivered her naturally. On December 6th, 2014, Karisma Normandy Rubio was born at 6:19pm, she weighed lb 7 oz, and was 12 inches long, she was absolutely perfect! We held her, prayed with her and said our goodbyes. The worst day of my life was thus far the day we left the hospital without her...this feeling I pray no other mom has to ever endure.
We wanted answers! Why did this happen? What went wrong? My cervix opened prematurely, but why? I was told I have an incompetent/short cervix. There is no way of knowing that my cervix is "weak" until pregnancy, and it usually won't be diagnosed until multiple 2nd trimester losses (3 or more). My doctors told me that for future pregnancies I would have a "stitch" in my cervix placed at 11-13 weeks of pregnancy. I couldn't help but feel that it was my fault, I should've noticed symptoms, I should’ve done something. In my eyes I had failed as a mom...but in reality there was nothing anyone could've done. My only consolation was knowing that there was something I could do in the future so this won’t happen again.
After having to say goodbye AGAIN to our baby when they cremated her, we finally brought her home with us in her teddy bear urn.
I began my research on the “stitch.” I found that there are different stitches, and two different ways of placing it. One is placed vaginally (TVC) and another placed abdominally (TAC). There are 3 different stitches placed vaginally (McDonald, Shirodkar & cervicoisthmic). I was told that in my case I would have a preventive TVC, and monitored more closely by a perinatologist (high risk pregnancy doctor). The TVC will be placed at 13 weeks gestation and I would be given an epidural during the procedure. I would be on bed rest for a few weeks and hope that the stitch will hold until the baby is full term. I was told that a TAC would not be placed because “it won’t be approved until I have multiple losses (more than 3).” The TAC is the most successful cerclage with less bed rest and it is placed permanently. It is placed as an outpatient surgery, through an incision in the abdomen, and can be done pre-pregnancy or during pregnancy. Most doctors believe it is too invasive and an overkill; mainly because they don’t know how to treat it. There are not many doctors who konw how to place the TAC. Most insurance companies don't cover TACs until you've had multiple losses and/or a failed TVC. This is ridiculous!!!! How can you expect someone to go through this pain multiple times until something is FINALLY done!?
During my research I came across some doctors who are experts in the TAC. I wanted advice directly from them. One doctor in particular in Chicago took the time to have a 1-hour phone consultation with my husband and I. He was very descriptive, empathetic and patient with us. He explained the options we had, including a more statistically successful TVC known as a TVCIC (cervicoisthmic cerclage). The TVCIC is indeed more successful than the other TVCs but still not as successful as a TAC as he explained. The TVCIC is not permanent unless you want it to, you can get it off before delivery and try for a normal vaginal birth. However not many doctors know how to properly place a TVCIC, instead they say they placed a TVCIC when they only placed a normal TVC. Many women who have a TVC, don't go full term, they have many complications around the same time they did in their previous pregnancies. I've learned of stories from mother's who have had a failed TVC and ultimately ended up getting a TAC after 2 or more losses. These stories are hard to comprehend, because their losses are unecessary. There are women who have had successful pregnancies with the TVC in place, but with more restrictions and complications during their pregnancy; and still didn't make it full term.
My husband and I discussed the different types of cerclages, and we both agreed that we don't want to go through what we did again, we simply don't want to take the risk; so we wanted to proceed with getting a pre-pregnancy TAC. However, I found that there are no doctors in our area that perform the TAC. The Doctor in from Chicago is an expert in this procedure, and his patients have nothing but good things to say about him, such as how grateful they are for their healthy babies. Normally a surgery like this will cost more that $25,000.00 plus hospital costs. The Doctor in Chicago is trying his best to help us out, because he wants us to have a healthy baby that we so desperately want (perhaps because he felt our pain over the phone). He agreed to do the surgery for us for $7,000.00 if our insurance wouldn't cover it (only charging us the surgical room/equipment and anesthesiologis). He also offered to call our insurance directly and explain the reason why he recommends I get it done, in the appeal process. He has tried to do everything he could to help us. I have tried to find a way to get the insurance to cover it, but they keep denying it because I have an HMO. They won't pay for anything more than 30 miles away. Even after I found a supportive OB/GYN to send a recommendation for referral/authorization to my medical group. Which now leaves us stuck trying to figure out a way to pay for it out of pocket.
I have never asked for help involving money from people. Maybe because of my pride, or because we thankfully never needed to. My parents and husband don't want me to ask for help, and are trying to figure out a way to come up with the money. But I know that despite how hard they try they won't be able to come up with the money by the surgery date. Which is why, I now humbly ask my friends and family for any help they can provide (anything helps). The Doctor in Chicago has made it possible to perform the surgery for us on March 21st, 2015 (ironically a week before what would have been Karisma's due date).
I thank everyone for taking the time to read our story, and for helping out with whatever you can. I hope that one day I will be able to return the favor in some form.
Before this happened to me, I didn't know about incompetent/short cervix. I had no idea that so many perfectly healthy women suffer from this. I am determined to become and advocate to spread awarenes of what an incompetent/short cervix is and to spread knowledge about the TAC and TVC, in order for people to make their own decisions, not what the insurance companies/doctors decide for them! People need to know that this does happen and insurances need to understand that they need to cover these procedures! It's time to stop playing with the lives of these healthy babies and their unconsolable mothers!
Organizer
Karina Rubio
Organizer
Cerritos, CA