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hopefulmainseattle
member
Incompetent Cervix or cervical insufficiency
hopefulmainseattle
member
I have had a crazy ride with my first pregnancy and really just want to
be able to share my story for anyone going through this and living in
Seattle..wondering what ther options might be or where to go for help! I
want you to know that I think of myself as well educated, having been a
research technician for 7 years before I went back to graduate school
to become Family Nurse Practitioner.I am familiar with the problem of
cervical incompetence and knew where to research when I was first
diagnosed.
Just to start out at the beginning....I had been receiving my OB care at the UW women's health clinic at Roosevelt and was having a great experience with them until at 19 weeks and 3 days we went in for our anatomy scan ultrasound to look at the baby and find out the sex. Baby looked great,found out we were having a girl but that my cervix looked shortened. I was sent home on bedrest, started on 600 mg Ibuprofen 4x/day, prometrium suppositories once/day and had an appt at the UW hi risk clinic in 2 days to get an ultrasound to look at the cervical length.
During my few days on bed rest before the appt, I began to research shortened cervix/cervical incompetence, reading several blogs/forums as well as peer reviewed scientific articles about the treatments and outcomes so I felt well informed before meeting the hi risk docs and even showed up to our first appt with a list of questions. A few days later we went in to see the perinatologist for the first time and my cervix measured at 1.5 cm ( normal length at <20 weeks should be >2.5 cm) with a large u shaped funnel at the internal cervical os with membranes protruding and bulging into the cervix. We discussed the option of a cerclage at that point, but the doctor said he does not tend to do them unless you have a history of second trimester miscarriage and often in that case it is done as a preventative cerclage around 12 weeks before any cervical changes are noticed. We told him we had read about people getting emergency cerclages at 20-23 weeks when the cervix was only 1.5cm and funneling as bad as mine was but he insisted we try the ibuprofen and prometrium for the next few weeks and continue bedrest.
At my next appt the following week, my cervical length measured 8mm with the funnel widening and membranes bulging even further. I was told to continue bedrest and watch and wait. The next week I was down to 5mm and was put on strict bedrest with a f/u appt in 4 days.I was also told that this could mean things are progressing quickly and that we had the option to terminate the pregnancy...which we said no way too! We again, like at every appt, brought up an emergency cerclage in which they continued to say no to and said was too risky!
So, as you now know, we had been followed by the hi risk clinic at the UW for 3 weeks and even as my cervix continued to shorten and dilate, they still refused to entertain the idea of a cerclage or any change in the plan. They wanted me on the prometrium, ibuprofen and bed rest..hoping that things would slow down and that i would not deliver before 24 weeks. Well, 4 days later (which was a monday) I went in for the next f/u appt and went from having some cervix to none and dilated 1cm with membranes protruding into the vaginal canal and so was finally admitted to the hospital..not to change the plan of care..but to be at the hospital in case i went into labor as they had no idea if it would happen in the next few days or weeks. My husband and I expressed concern every day to the docs about wanting to get my cervical dilation checked in case it was continuing to get worse and would potentially be facing delivery of our baby before viability at 24 weeks. They refused to look and would only say "We don't want to stir things up in there". We even tried to ask them why they would not consider cerclage if the risk of having our baby before 24 weeks was very likely..as we know that it is risky, but at least not as risky as losing our baby. They did not want to discuss it further..basically saying that they just don't do them in this situation..and if we had the baby now there would be nothing they could do to stop it or save her. We decided we were not ready to give up and just wait and see anymore.
So, on Wednesday (2 days after getting admitted) while we were still admitted at the UW we asked the attending and residents to begin the referral process for us so we could get a second opinion from Swedish Hospital in regards to what was going on as we felt that the UW was continuing such a conservative approach and we wanted to explore all of our options. They said they would get started on this for us and look into how to do this..so we left it in their hands. Thursday afternoon rolled around and when we asked about getting a second opinion from swedish, the resident simply said that they could not do it as there were a lot of politics involved and they could not do a transfer of care..but that our only option was "to discharge ourselves, go home and hope nothing happens and try to get an appt in with the perinatologist group at swedish." This left us in the room crying with little hope...almost ready to just throw in the towel and leave everything up to fate. So i called my boss carol up on the phone (who is the Md that I practice with), crying, pleading for some other option as we were not ready to just give up..she said she would make a call and get back to me.
A few minutes later (at 430 pm on thursday) she called me back to say she spoke with Dr. Sameer Gopalani at Swedish and that he would be calling me within the hour. 5 minutes later, he called me from his home and asked me to explain what had been going on the past 3 weeks. After i told him everything, he said he would take me tonight, save a room and do whatever he could to help us. He even told us exactly what to do..to ask to be voluntarily discharged, fill out an ROI to be able to bring copies of all our records with us, go to the 5th floor L&D triage unit at swedish and that he would let them know we were coming and would meet us there. So at 6pm..we started the process. By 8:30 pm we were out and on our way.
My best friend met us at the UW in her parents SUV with the back seats down and loaded with pillows and blankets..got me in the back and took us over..even tried to park in an empty ambulance spot at the ER entrance. As soon as we walked into the triage unit, they knew who we were and got us in a room and monitored. Dr. Sameer was already there, reviewed our records and decided to take a peak...saw i was now 3cm dilated with membranes bulging and that the best and likely only option was to schedule a cerclage surgery for the next morning and get me admitted.He literally said what we had been saying to the UW docs all along...
Thursday night was a long night for us though, we were taken to the antepartum unit, had an IV started with antibiotics, had blood drawn, an ultrasound and 3 attempts at an amniocentesis (3rd time little isabella tried to grab the giant needle so he had to pull out..already a trouble maker) Got to sleep around 2am, but woken up every hr for something else.
The next morning we woke up and found out that the surgery had been scheduled for 11am with Dr..Amory. Not only did she come in that morning to chat with us, but she sat on the foot of the bed with me, rubbed my leg and said she would take good care of me. We even met the other perinatologists she partners with here to make sure we didn't have any other questions or concerns. Even the transport lady that took me down to the OR was sweet, warning me of every little bump.
Once in the OR, i gave them problems with my spinal block..as the anesthesiologist had trouble getting the needle in the epidural space..took her 30 minutes..but the entire time( as it was extremely painful) Dr. Amory knelt by my side, held my hand, wiped the sweat off my forehead with her hand and talked with me to try and distract me. (The block did not completely work...as i felt every stitch and pull..but told her to continue and just kept saying over and over " I love u isabella") After the surgery, she wanted to do an amnio to make sure there was no infection, but my BP kept dropping and i was feeling lightheaded and nauseous on the OR table....so started to throw up..and again, the doc stopped what she was doing to hold my hair back and wipe the sweat of my brow until i was through. Afterward, she told me that the amniotic sac was bulging past the cervix a lot but she managed to safely push them back into the uterus and place a great stitch at 2.2 cm up the cervix. It was a success! It took me almost 2 hrs to get out of post-op but Dr. Amory went back to the room to let my husband know the details..he even hugged her!
There was a lot of cramping in the beginning after the surgery, but by later in the evening I was feeling pretty good..though was started on 50mg indocin 2d/day for the next few days. The amnio results came back with no signs of infection.
It is now 5 weeks post surgery and I am still here at swedish. This is due to the fact that for the first few weeks after the surgery my cervix was still not behaving and was still dilated 1cm with the sac bulging past the stitch. I also had low AFI from the hi doses of ibuprofen they had me on. I am now on nifedipine 60 mg ER 2x/day and P-17 shot once a week. For the past 3 weeks now though, my cervix has been closing up and went from 5mm to 1cm to 1.5 cm last week and is closed with the funneling improving. We are now at almost 28 weeks and cannot believe that 5 weeks ago, the UW was ready to give up on us and our baby and that now we have >90% chance of survival if we were to have her right now...thanks to the dedication of the staff at Swedish and our desire to fight for our little girl.
Everyone we have met here has been amazing, the nurses, the docs, the staff. They all have seemed so interested in doing whatever they can to save our little one. This place has truly been a blessing and we keep telling ourselves..that no matter what happens we know we have tried to do everything possible..and as parents...that is all we can do.
If you are in a similar situation, please feel free to email me as I would love to chat at alienz12@hotmail.com
Just to start out at the beginning....I had been receiving my OB care at the UW women's health clinic at Roosevelt and was having a great experience with them until at 19 weeks and 3 days we went in for our anatomy scan ultrasound to look at the baby and find out the sex. Baby looked great,found out we were having a girl but that my cervix looked shortened. I was sent home on bedrest, started on 600 mg Ibuprofen 4x/day, prometrium suppositories once/day and had an appt at the UW hi risk clinic in 2 days to get an ultrasound to look at the cervical length.
During my few days on bed rest before the appt, I began to research shortened cervix/cervical incompetence, reading several blogs/forums as well as peer reviewed scientific articles about the treatments and outcomes so I felt well informed before meeting the hi risk docs and even showed up to our first appt with a list of questions. A few days later we went in to see the perinatologist for the first time and my cervix measured at 1.5 cm ( normal length at <20 weeks should be >2.5 cm) with a large u shaped funnel at the internal cervical os with membranes protruding and bulging into the cervix. We discussed the option of a cerclage at that point, but the doctor said he does not tend to do them unless you have a history of second trimester miscarriage and often in that case it is done as a preventative cerclage around 12 weeks before any cervical changes are noticed. We told him we had read about people getting emergency cerclages at 20-23 weeks when the cervix was only 1.5cm and funneling as bad as mine was but he insisted we try the ibuprofen and prometrium for the next few weeks and continue bedrest.
At my next appt the following week, my cervical length measured 8mm with the funnel widening and membranes bulging even further. I was told to continue bedrest and watch and wait. The next week I was down to 5mm and was put on strict bedrest with a f/u appt in 4 days.I was also told that this could mean things are progressing quickly and that we had the option to terminate the pregnancy...which we said no way too! We again, like at every appt, brought up an emergency cerclage in which they continued to say no to and said was too risky!
So, as you now know, we had been followed by the hi risk clinic at the UW for 3 weeks and even as my cervix continued to shorten and dilate, they still refused to entertain the idea of a cerclage or any change in the plan. They wanted me on the prometrium, ibuprofen and bed rest..hoping that things would slow down and that i would not deliver before 24 weeks. Well, 4 days later (which was a monday) I went in for the next f/u appt and went from having some cervix to none and dilated 1cm with membranes protruding into the vaginal canal and so was finally admitted to the hospital..not to change the plan of care..but to be at the hospital in case i went into labor as they had no idea if it would happen in the next few days or weeks. My husband and I expressed concern every day to the docs about wanting to get my cervical dilation checked in case it was continuing to get worse and would potentially be facing delivery of our baby before viability at 24 weeks. They refused to look and would only say "We don't want to stir things up in there". We even tried to ask them why they would not consider cerclage if the risk of having our baby before 24 weeks was very likely..as we know that it is risky, but at least not as risky as losing our baby. They did not want to discuss it further..basically saying that they just don't do them in this situation..and if we had the baby now there would be nothing they could do to stop it or save her. We decided we were not ready to give up and just wait and see anymore.
So, on Wednesday (2 days after getting admitted) while we were still admitted at the UW we asked the attending and residents to begin the referral process for us so we could get a second opinion from Swedish Hospital in regards to what was going on as we felt that the UW was continuing such a conservative approach and we wanted to explore all of our options. They said they would get started on this for us and look into how to do this..so we left it in their hands. Thursday afternoon rolled around and when we asked about getting a second opinion from swedish, the resident simply said that they could not do it as there were a lot of politics involved and they could not do a transfer of care..but that our only option was "to discharge ourselves, go home and hope nothing happens and try to get an appt in with the perinatologist group at swedish." This left us in the room crying with little hope...almost ready to just throw in the towel and leave everything up to fate. So i called my boss carol up on the phone (who is the Md that I practice with), crying, pleading for some other option as we were not ready to just give up..she said she would make a call and get back to me.
A few minutes later (at 430 pm on thursday) she called me back to say she spoke with Dr. Sameer Gopalani at Swedish and that he would be calling me within the hour. 5 minutes later, he called me from his home and asked me to explain what had been going on the past 3 weeks. After i told him everything, he said he would take me tonight, save a room and do whatever he could to help us. He even told us exactly what to do..to ask to be voluntarily discharged, fill out an ROI to be able to bring copies of all our records with us, go to the 5th floor L&D triage unit at swedish and that he would let them know we were coming and would meet us there. So at 6pm..we started the process. By 8:30 pm we were out and on our way.
My best friend met us at the UW in her parents SUV with the back seats down and loaded with pillows and blankets..got me in the back and took us over..even tried to park in an empty ambulance spot at the ER entrance. As soon as we walked into the triage unit, they knew who we were and got us in a room and monitored. Dr. Sameer was already there, reviewed our records and decided to take a peak...saw i was now 3cm dilated with membranes bulging and that the best and likely only option was to schedule a cerclage surgery for the next morning and get me admitted.He literally said what we had been saying to the UW docs all along...
Thursday night was a long night for us though, we were taken to the antepartum unit, had an IV started with antibiotics, had blood drawn, an ultrasound and 3 attempts at an amniocentesis (3rd time little isabella tried to grab the giant needle so he had to pull out..already a trouble maker) Got to sleep around 2am, but woken up every hr for something else.
The next morning we woke up and found out that the surgery had been scheduled for 11am with Dr..Amory. Not only did she come in that morning to chat with us, but she sat on the foot of the bed with me, rubbed my leg and said she would take good care of me. We even met the other perinatologists she partners with here to make sure we didn't have any other questions or concerns. Even the transport lady that took me down to the OR was sweet, warning me of every little bump.
Once in the OR, i gave them problems with my spinal block..as the anesthesiologist had trouble getting the needle in the epidural space..took her 30 minutes..but the entire time( as it was extremely painful) Dr. Amory knelt by my side, held my hand, wiped the sweat off my forehead with her hand and talked with me to try and distract me. (The block did not completely work...as i felt every stitch and pull..but told her to continue and just kept saying over and over " I love u isabella") After the surgery, she wanted to do an amnio to make sure there was no infection, but my BP kept dropping and i was feeling lightheaded and nauseous on the OR table....so started to throw up..and again, the doc stopped what she was doing to hold my hair back and wipe the sweat of my brow until i was through. Afterward, she told me that the amniotic sac was bulging past the cervix a lot but she managed to safely push them back into the uterus and place a great stitch at 2.2 cm up the cervix. It was a success! It took me almost 2 hrs to get out of post-op but Dr. Amory went back to the room to let my husband know the details..he even hugged her!
There was a lot of cramping in the beginning after the surgery, but by later in the evening I was feeling pretty good..though was started on 50mg indocin 2d/day for the next few days. The amnio results came back with no signs of infection.
It is now 5 weeks post surgery and I am still here at swedish. This is due to the fact that for the first few weeks after the surgery my cervix was still not behaving and was still dilated 1cm with the sac bulging past the stitch. I also had low AFI from the hi doses of ibuprofen they had me on. I am now on nifedipine 60 mg ER 2x/day and P-17 shot once a week. For the past 3 weeks now though, my cervix has been closing up and went from 5mm to 1cm to 1.5 cm last week and is closed with the funneling improving. We are now at almost 28 weeks and cannot believe that 5 weeks ago, the UW was ready to give up on us and our baby and that now we have >90% chance of survival if we were to have her right now...thanks to the dedication of the staff at Swedish and our desire to fight for our little girl.
Everyone we have met here has been amazing, the nurses, the docs, the staff. They all have seemed so interested in doing whatever they can to save our little one. This place has truly been a blessing and we keep telling ourselves..that no matter what happens we know we have tried to do everything possible..and as parents...that is all we can do.
If you are in a similar situation, please feel free to email me as I would love to chat at alienz12@hotmail.com
This discussion has been closed.
Re: Incompetent Cervix or cervical insufficiency
I am not in your situation, but Thank You for sharing your story. I am happy to hear that someone took you seriously and gave you the care that you not only deserved but that was what you were asking for. You are awesome for being such a great advocate for your baby.
Good Luck with the rest of your pregnancy!
Wow, what an amazing story! I can't even imagine how scary that must have been, and as the PP said, good for you for fighting for that second opinion. Swedish is definitely the place to be if you're high risk. My boss's wife, who happens to be an OB, spent two months there while battling pre-term labor.
I hope the rest of your pregnancy goes smoothly. Keep us updated!
This!! And I love Swedish, they are the best!
My baby boy was born close to 31 weeks at Swedish/First Hill. The NICU/ISCU is really good there. I had a good experience there. My son was there for 35 days. It helped me to talk to the social workers. As well, I was told if my baby was in the hospital over 30 days that I could apply for K01 Medicaid for my baby. Once I qualified for the K01 Medicaid, I was able to qualify for the WIC program which has mostly helped with formula and baby food for our baby. There was also a Preemie Parent Support Group--it helped to talk to other parents.
I was never given a reason why the baby came early. But I remember getting to 28 weeks in my pregnancy (after going through two previous miscarriages) and thinking that my baby had a higher survival rate. I was so thankful to get to even 31 weeks. And I am really thankful that Swedish Hospital has a great NICU/ISCU unit that helped my baby boy get through his first couple of weeks of life.
Wow, what an amazing story!! I am so glad you were your own advocate and took care of yourself and your baby girl!! How awful and cold of the UW doctors to dismiss your pleas to them, and then not submit your referral request. I hope that your little miss stays put for at least another month or two. Good luck to you!!
M/C 9/21/09 | M/C 12/24/09 | BFP 1/23/10
Madeline Rey DOB 9/30/10
TTC # 2 Jan 2013
BFP 3/12/13 | EDD 11/18/13
It's a GIRL! Lydia Marie!
Thanks everyone! I am on day 101 of strict bed rest but am 34 weeks! They scheduled the cerclage removal for 36 weeks on my 6th.I even get to celebrate my baby shower this weekend and am still pregnant for it:)
What a powerful advocacy story! My SIL was diagnosed with Incompetent Cervix, and her story was very similar to yours. However, her shortening wasn't as quick as yours. Her water broke midway through her 28th week. They were able to keep the baby in for two more weeks, to mature his lungs. He was born two months early, but did really well in the level 4 NICU at UW. He was transfered to GH Cap Hill and discharged a month later.
I hope your little girl is able to spend a little more time in the womb. GL! Keep us updated.
The only Easter Bunny I can get behind.
Maxwell Joseph 4/09 Lucy Violet 10/12