Announcement

Hi Everyone! It’s been a very long time since I posted anything here, and I’m sorry about that. I have a lot of plans for the blog and lots of useful information coming, but I’ve had a lot on my mind lately. Here’s the reason I’ve been so preoccupied:

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Introducing our newest little one, Andrew. He’s wonderful, but it was a long, difficult pregnancy, and I had a hard time concentrating on anything else. Hopefully I’ll be able to get back to work pretty soon. In the meantime, thank god for the TAC and new babies.

A Note on Contractions and Preterm Labor

This is just a brief post to mention a tip that I hope will be helpful to anyone suffering from contractions or irritable uterus during pregnancy. I have had contractions/irritable uterus/preterm labor in all of my three pregnancies. In the last two, with my TAC I was able to endure the contractions and make it to full term, despite starting to contract at 22 weeks and 16 weeks respectively. There are many ways of dealing with preterm contractions that have varying degrees of success. I will go over all of those methods in more detail later, but there’s one method that helped me immensely, and it’s one that I haven’t read about anywhere else. Ready for this?

A maternity support belt.

That’s it. It’s simple, cheap, and (for me at least), incredibly effective. Wearing a basic maternity support belt helped control my contractions more than any other method I have tried. Once I started contracting, I wore it 24 hours a day, 7 days a week, only taking it off to wash it or to bathe. When I did take it off, my contractions immediately worsened, and they immediately calmed when I put it back on. It’s a big part of the reason I was able to stay pregnant to term, in my opinion.

I have no medical basis for this, and I can only make educated guesses about why it works. I know it probably won’t work for everyone. I just wanted to put this trick out there in case it might help anyone else the way it helped me. I’d love to know if you try it and whether it helps you.

Belt up, ladies.

Stories of Strength: An Incredibly Strong Mama

The amazing mama who shared this story wanted to tell it anonymously. It’s such a horrible shame that she KNEW she needed a TAC and couldn’t get one because of her insurance. It’s a story I hear way too often. No parents should have to lose a child – let alone TWO children! – to satisfy their insurance. Thanks for telling your story, mama. I can’t wait to hear about your rainbow baby.

If you’d like to share your story, please send it and any pictures to tac.questions@gmail.com.

 

On April, 2008, my husband and I welcomed a healthy baby girl at 40+5 weeks. It had been a fairly easy pregnancy. I was induced and she was born eight hours after the induction. I refused an epidural until the pain became unbearable. At that point, I was told it was too late to get it. I got a dose of narcotics, but that didn’t help much. Though I had an episiotomy, baby turned her shoulders on her way out and tore my perineum. It took about a month to heal, but things got better with time. Five years later, we decided to try for baby number two. I had my Mirena IUD removed and I conceived that month. Everything had been going well except for a couple of episodes of unexplained spotting. I had also been having some pressure in my lower abdomen. Each and every check and ultra sound had shown that baby was fine, but that he was low lying. My cervix was also said to be friable; nothing serious.

However, on 7/15/13, I went for an anatomy scan and no sooner had she started the scan than I noticed her tense. She asked if I have fibroids; I said no. She asked if I was having contractions; I said I had been having Braxton Hicks Contractions on and off but that my OB had said it was normal. By this point, I was beginning to get worried. I mean, why all these questions? The tech kept asking me to change position and also kept pressing my tummy so hard it was somewhat painful. Eventually, she mentioned that the baby was very low. So low that she couldn’t get a good view of his toes. She soon excused herself and came back with Dr. White, Maternal Fetal Medicine (MFM). He asked if I had been having any pain. I told him that I had spotting and bleeding 2 times in this pregnancy but ultrasounds showed that baby was fine. Each time, nevertheless, they didn’t check the cervix. 15 weeks was the 2nd ultra sound due to bleeding, and the tech had said that baby was fine. She did mention, however, that he lay a little low. Nothing to worry about. After that U/S, a nurse practitioner had done an internal check and said that my cervix seemed inflamed but also mentioned that some people just have a lot of blood during pregnancy. I told Dr. White that about two weeks after the nurse practitioner had checked me, I had started having some pain on my right hip and around my groin – right side only. They were about one to two minutes apart and about ten seconds long. They started about 10 pm and went on till the next afternoon. There was no bleeding / spotting. I called my OBGYN in the morning and she had no idea what that would be. She mentioned I may have kidney stones or round ligament pain, but asked me to give a urine sample to check for the kidney stones. I never heard from the doctor’s office, so I assumed that I was good to go.

Dr. White asked the tech to do a vaginal ultrasound. At that moment, Dr. White announced the bad news. My cervix was open. I was so naïve that I didn’t understand the implications of his news. He very gently explained that the cervix is supposed to remain closed until the baby is close to term. However, mine was already fully effaced and dilated at only 18 weeks. He said that this was very serious and that I would lose the baby as he wasn’t viable. He diagnosed me with an Incompetent Cervix and sent me to a hospital one hour away from home with hopes that I would be given an emergency cerclage. At the hospital, I was checked and was told that I was already 2cm dilated with bulging membranes. They kept me for observation. Luckily, I wasn’t having contractions. Later that night, one MFM came in to check me and she said that she might attempt a vaginal cerclage, but that she couldn’t do it that night. She said to wait until the next morning then the next doctor would do it for me.

The next morning, the MFM on duty checked me and said that he wouldn’t do anything at this point. It was too risky. My membranes had already been exposed to the vaginal bacteria for God knows how long. There was no way he was going to try to push back the membranes and attempt a suture. It was too late. I was definitely going to lose this baby. He told me to terminate the pregnancy or go home and wait for the baby to “fall out.” He tried to “console” me that I was still young and that I would be able to carry another baby to term with proper care. He even went ahead and narrated a story about a young woman who got a stitch after her membranes had bulged. How she got a bad infection that had her in the ICU for weeks before finally killing her. He said even if the infection didn’t kill me, it would definitely kill the baby and that I would possibly lose my uterus . . . meaning no more babies! I hated this doctor. I never ever wanted to see him again or be in the same room with him.

That midnight, my waters broke and the next day I was induced and delivered my sleeping son. He weighed 240 grams. He was so perfect and handsome. He looked just like his daddy. We were totally shattered. It’s as if our world came to an end. I had always heard of women miscarrying but I had never thought it would ever happen to me. I felt like a failure. My body had failed to do the one thing it was made to do. I felt so guilty. As if I had murdered our baby and destroyed my family. How could this be happening to us? Did we really deserve this? The MFM said that my next pregnancy would be high risk. That I would be followed closely and do a Trans Vaginal Cerclage (TVC) at around 16 weeks. We left the hospital empty handed and left our baby at the hospital, so cold and lonely.

I went back home and threw myself into research. I wanted to know what an Incompetent Cervix was. I wanted to know what my options were. I joined Facebook groups where I heard about other women who had been in my shoes. Though I felt relieved that I was not alone, the overwhelming sadness and guilt lingered. Through the Facebook group, I heard about Abbyloopers, an online group that advocates for a much better stitch than the TVC, the Trans Abdominal Cerclage (TAC). Needless to say, I joined Abbyloopers and delved into further research. As soon as I read about the TAC, how high it’s placed, its success rate, etc., I was sold. I immediately knew that a TAC was my antidote. I was going to get a TAC. I felt relieved and so very excited. Finally, I was going to have my rainbow. No bed rest needed. YAY!

A week after my loss, I saw my regular OBGYN. He told me he had no idea why my first pregnancy went well and this one didn’t. He also suggested doing a TVC at around 13 weeks of gestation and be closely monitored. He also mentioned possible bed rest. I told him I didn’t want a TVC. What I needed was a TAC. He was surprised I even knew what that was. He discouraged me saying it was overkill. It was too invasive, and that a TVC would work just as well. I wasn’t about to let him convince me otherwise. I had to get the TAC whether he liked it or not. He had no idea what I was going through, so to hell with him and his TVC ideas. I looked up a TAC doctor near me and found Dr. Ivar Einarsson at Brigham and Women’s. I scheduled a consult with him and I was so hopeful that this was it for me. Unfortunately, he told me that the kind of insurance I had would not cover the TAC until I tried a TVC and/or had a second loss. What? I almost went insane. How could this be? I was so sure I was going to get my TAC and now this man was telling me I couldn’t until I lost another baby! I called insurance but they refused to authorize a TAC saying it was not necessary at this point. I couldn’t afford to pay $20,000 out of pocket to pay this doctor. I also couldn’t afford the $5,000 needed to have this surgery done by Dr. Davis in New Jersey. This TAC route was looking bleak at this point. It was not going to be a possibility. We had run out of options. Due to this sad fact, my husband and I decided to try the TVC, our only option, and hope and pray for the best. Worst decision ever, needless to say!

In October, 2013, about three months after my loss, I got pregnant. Things started going downhill really early. I had bleeding at around 9 weeks. I went to the Emergency Room and baby was fine. My cervix was checked manually and it was said to be closed. That night, I had a lot of discharge that looked like my mucous plug. At this point, I was in the middle of changing OBGYN, so I had to wait about a week and a half to be seen by my new doctor. She checked my cervix and said that it was so low and open at the external os. She referred me to an MFM who was said to be the best at the area. The next day, I met this new MFM. Ultrasound showed that the cervix was indeed open at the external os but closed at the internal os. She also did a manual check and mentioned that my cervix was bad, that she could easily put a speculum through it. She put me out of work and on moderate bed rest until a week after my cerclage surgery. She also prescribed progesterone suppositories.

At exactly 13 weeks and one day, I had my TVC placed. I continued bed rest at home. A week after placement, I went in for my cervical length check and the doctor mentioned that she didn’t like how my cervix looked. It was tilted backward and she couldn’t see the cerclage too well. She told me not to go back to work until further notice. Each week I had vaginal ultrasounds, things kept looking better and better. My length was always between 4 and 5 cm. However, at 19 weeks, I was told that I was funneling past the stitch. I was given a pessary and put on hospital bed rest with bathroom privileges. Unfortunately, I continued funneling a week later and membranes budged. I was denied an emergency TVC due to slight fever; but was put on strict bed rest. The foot of my bed was elevated, trendelenburg position, and I had to eat, drink, pee, and poop in that position. I was miserable to say the least, but was very determined to do everything in my power to keep baby cooking. I religiously stayed in this position for about a week, but still, my membranes kept bulging to the point that I could feel them with my hand!

Unfortunately, my water broke and my pessary and cerclage had to be removed. My MFM explained that these were foreign objects and that she did not want to risk an infection. I was checked every few hours for infection. I was informed that as long as I did not develop an infection, then baby would stay in until 32 weeks. I had hopes. My doctor came in one morning and gave me important dates. Dates that included when steroids would be administered, when baby was viable, when baby would be 28 weeks, and finally, 32 weeks, delivery day. I was so hopeful. I prayed and prayed. Sadly, that same day, my cord prolapsed. The pregnancy had reached an end. I had to be induced. The next day, February 27, 2014 @ 21+4, we lost yet another perfect baby boy. We were beyond devastated, but then my husband and I decided not to lose hope; to look into the TAC once again.

I called up Dr. Einarsson, the TAC doctor I had met after my first loss and after consulting with him it was decided a TAC was my only option if I wanted to have more babies. My MFM was also 100% on board with this option. Luckily, or let me say ironically, my insurance covered my TAC, no questions asked. On 4/20/2014, while the Boston Marathon was taking place, I had my TAC done. It was bitter sweet that I finally had the one thing that I had needed from the word go. I felt relieved and hopeful that at last, our nightmare was at an end. My husband and I felt like we had another much safer chance at having our rainbow. We now have hope. Hope that eventually, we will put this TAC to work and that it will help us finally bring home a sweet and healthy, full term baby.

Stories of Strength: Felicity’s Story

Felicity is an Australian TAC mama! She has written from the other side of this whole TAC experience – from over the rainbow, I guess you could say. She has two gorgeous, healthy girls. Note that her TAC is not mersilene, but IV tubing; an interesting variation from most TACs placed in the US. Thanks so much for sharing your story, Felicity!

If you’d like to share your story, please send it and any pictures to tac.questions@gmail.com.

 

The Delight a Cervical Cerclage Promises
The story of Australian mum, Felicity, and two very different pregnancies.

Pregnancy One: Baby girl, Allegra, born by c-section on 09/09/09 at 39.5 weeks.

“What if I sneeze?” I asked.
“Yes, that could bring on labour” my obstetrician noted with that calm bedside manner you expect.

And after spending a few nights at the Gold Coast’s John Flynn Private Hospital he then said “it’s best if we transfer you to the Mater. If you deliver now we can’t look after the baby anyway – you’d have to go there.”

That was the third precautionary advice I’d been given in a matter of days. The first was at the scheduled ‘growth scan’ when the sonographer said “I think the doctor will admit you immediately. You may not be going home.” The second, that really stunned me, delivered by the resident obstetrician at the scan sounded much like this – “you really need to get to 28 weeks.” My thoughts immediately jumped to how I was going to control my ‘incompetent cervix’ and ensure it didn’t reduce in length anymore. I couldn’t come up with a plan. After all, I hadn’t even felt it shorten – no contractions, no indication whatsoever.

For a first pregnancy, the detection of a single umbilical artery and a baby with only one kidney at 12 weeks, an amniocentesis at 20 weeks, identification of an incompetent cervix at 25.5 weeks and diagnosis of gestational diabetes at 29.5 was making for an eventful 2009.

By far, the most significant statement though, made on 10 June 2009 read like this: “There is funnelling of the membranes down the internal os of the cervix which is now only 10 mm in length. This may remain like this for several weeks or may result in early PPROM or PTL. In view of the high risk for preterm delivery suggest administration of steroids and bed rest.”

With a new obstetrician, I was to become a patient of Brisbane’s Mater Mothers’ Hospital, the Queensland hospital of choice for high quality maternity services with an unmatched neonatal intensive care unit.

And so it was true. I was administered steroids, prescribed progesterone and nifedipine, hospitalised for 60 days and ordered to total bed rest (with a further 30 days of bed rest at home). Total bed rest meant I was allowed to stand to walk to the bathroom – only. Yet one week earlier I was delivering a large arena event for the Queensland Government which incorporated thousands of students and teachers. In fact, the results of one scan at 25.5 weeks meant life slowed down to the pace of a snail!

At 34 weeks my care was transferred back to my original obstetrician at John Flynn Private Hospital, I was released from hospital and awaited the planned delivery of my baby by elective caesarean at 39.5 weeks.

Finally, she was greeted by two passing statements from that same obstetrician who was so calm many weeks before – “Felicity, you have a girl” and “your cervix is completely blown out.” And so it was, the distress, worry, sadness and anxiety turned to glee, with just one moment of calm to punctuate the crisp, sterile air of the operating suite.

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Pregnancy Two: Baby girl, Ilaria, born by c-section on 28/03/14 at 37.5 weeks.

Prior to even falling pregnant with baby number two I set a precedent for this experience by doing the research, followed by the advising. I wasn’t going to put myself in the anxious position of reactive reasoning as I had with my first pregnancy. To my obstetrician at the Gold Coast’s John Flynn Private Hospital I asked what he would do. The reply – a trans vaginal stitch. I knew it only had a success rate around 60%. I wasn’t satisfied.

To Laurie Brunello, a Brisbane-based doctor I had found through extensive online research – “I’m here to find out about a trans abdominal cerclage, and it’s success rate for incompetent cervix.” He replied “a cerclage will enable you to maintain your normal activity level throughout your pregnancy. Just don’t go sky diving.” He added that he’d been doing cerclages since the mid-1970’s, is one of a few obstetricians who do the surgery in Australia, can claim a 90 – 95%+ success rate and believes no woman should have to lose a baby to request the procedure. Dr Laurie Brunello was to be my saving grace.

In February 2012, under general anaesthetic at Brisbane’s Mater Private Hospital he lassoed my cervix with a ring of plastic IV line. I remained in hospital for five days post-surgery as the healing process started for the second cut along my previous c-section scar.

With some sadness, albeit great trust and admiration for Dr Brunello’s specialty, I had to take his advice to have my future pregnancy monitored by Dr Alexander Alexander. The time had come for Dr Brunello to retire. My confidence remained steadfast though – Dr Alexander had been trained in the cerclage procedure by Dr Brunello.

By July 2013 I was expecting baby number two and by September I had seen Dr Alexander for the first time. To my new obstetrician I explained that while I hadn’t lost any children, a shortening of my cervix to 10 mm with baby number one was unexplained by no family history, no previous pregnancies and no surgery. What I did know though was that I simply did not have the emotional strength to go through another pregnancy with forced bed rest from 25 weeks. Sensing my concern and noting my past history his advice was to reduce activity from 18 – 26 weeks. At this point I was reminded of Dr Brunello’s humorous storytelling of sky diving, or lack thereof. I shared this with Dr Alexander and told him I had grate faith in the cerclage, had chosen the pioneer and best specialist in Australia for the procedure, and felt positively able to continue my pregnant life along the same vein as my pre-pregnant days.

Unlike pregnancy one in 2009, 2013 and 2014 presented as a very uneventful ante-natal period. I walked each morning up until 18 weeks gestation then remained relatively sedate until 26 weeks. I did however swim most days during months five and six of the pregnancy, undertook light gym activity post-26 weeks up until 34 weeks and continued working fulltime until 36.5 weeks.

Control would be one way to describe this pregnancy. I felt in control. But also, health, excitement, and energy are words that spring to mind. I was doing this! And with complete elation I heard correctly when Dr Alexander announced he would bring Dr Brunello out of retirement to assist delivery of this beautiful baby on 28 March 2014 at Brisbane’s Mater Mothers’ Private Hospital.

When the day arrived and our bundle of joy cried out for the first time, “Ilaria!” we replied after Dr Brunello asked what her name would be. With a gentle Italian lilt he spelt “I .. L .. A .. R .. I .. A..” and announced “my father is Ilario – names ending in ‘a’ signal the female variant. In Italian it means happy, cheerful.”

Not only were we happy and cheerful, but in the same room for the first time was the complete team that made this pregnancy stress-free, joyful and successful. What a delight!

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Stories of Strength: Tanesha’s Story

Tanesha’s story is so sadly familiar. After losing three beautiful babies, she’s got her TAC and is ready to try again. Thanks for sharing your experience, Tanesha.

If you’d like to share your story, please send it and any pictures to tac.questions@gmail.com.

I’m about 2 days post-op from my Dr. Davis pre-pregnancy TAC and decided to share my journey up to this point. I have not given up hope and I hope that you will not either. I’m 35 years old and I have 2 children from a prior marriage – a 16 year old daughter and 12 year old son. My husband and I married in January 2010. We conceived twin boys January 2013 on our 3 year wedding trip to NYC and were on top of the moon.

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Tanesha and her husband on vacation, when the twins were conceived.

At my 20 week anatomy scan it was discovered that my cervix was open and I had to be rushed to L&D. Long story short, I had an emergent cerclage, and since my membranes were already bulging, they then ruptured. After Pprom (preterm premature rupture of membranes) of baby A’s waters and 3.5 weeks on hospital bed rest, I had to deliver them due to infection and they were born too soon. After meeting with specialists and all, it was decided that due to my history, my issue was more related to the fact that I had twins and not my cervix. No one thought that I’d need a preventative cerclage and that it was more risky since it could cause infection. I would only have p17 (progesterone) shots and weekly cervical length checks.

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Tanesha’s beautiful boys, Tyler and Taylor. Photo by NowILayMeDownToSleep photographers.

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Taylor’s and Tyler’s perfect tiny feet. Photo by NowILayMeDownToSleep photographers.

It didn’t take me long to get pregnant and I did so 4 months after my loss in October 2013, the same month my twin boys were due. I was so excited and thankful for another chance. I stayed positive. Had affirmations that I posted daily. I started a journal. I tried to drown out my fears with faith and hope. February 17th, I went and did a little shopping. When I got home I noticed some brown spotting. I was 17 weeks and had just had my first p17 injection about 5 days prior and my cervical length at that time was 5 cm. I decided to go to L&D as a precaution even though I felt that I was overreacting. Of course, as soon as I was checked out, the sonographer told me that my cervix was open and she could already see my baby girl’s hand. Heartbreak all over again! I had my baby girl within 24 hours and started the process of grief and disbelief all over again.

I started researching and found Dr. Davis and Dr. Haney. Since Dr. D was less than 2 hours away from me and I had such a good feeling about him I called, did a phone consult, and scheduled my appointment for a little more than 6 weeks from my loss. My husband had this week off already because my stepson is attending Duke this fall and on Monday we had to go down for Duke Blue Devil days in NC. Thankfully Dr. D had the same week open for my TAC. We went down on Thursday for pre-op. It took less than 2 hours and we checked into our hotel, the Hampton Inn on Blackhorse Road, before heading to his office since we were so early. The hospital rate for our stay was $99 and it was nice, clean, and in a good busy area with lots of restaurants. The hospital was about 5 minutes away and easy to find. Dr. D didn’t think we would get GPS coverage in our area, but we did and found it quickly. We used free valet parking and headed up to the 3rd floor for our appointment. We waited about 20 minutes and filled out some paperwork and Dr. D came and got us. We chatted, admired his collection of sodas, and I cracked up at his dry humor and multitasking skills. He asked me what I was going to have for my “last meal.” SMH. That didn’t help my nerves but it still cracked me up. He then walked us down to show us where to come in for surgery the next day. No food or drink after midnight. He gave us some restaurant suggestions and then we were free to go.

Fast forward to Friday. We checked in in the general same day surgery area around 11 am. Be prepared to wait an hour or 2 to actually go back for this part. I paid $100 copay and finally went back. The nurses were awesome in prepping me. They were really sweet and talked to me a lot. They were sweet even though my veins gave them problems (they give everyone problems). They went and got my husband and explained how everything would work, and then I finally went back around 2:30 or so for the surgery. I did not see Dr. D beforehand and I was knocked out almost immediately from general anesthesia. When I woke up, they wheeled me to recovery and I felt pretty good. I was not really loopy after getting to my room. I was a little hungry but not starving and I was on a liquid diet for 24 hours. My husband said that Dr. D came up to him and told him, “Piece of cake” and shook his hand. That was his post-surgery report in true Dr. D fashion. Lol. The next day after having the catheter removed I did some walking around, had a post-surgical ultrasound, and Dr. D gave me a summary of his reports and helped me with aftercare instructions. We then hit the road and came back home.

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Tanesha’s post-op selfie.

I am feeling a lot better than I thought I would. Besides having D&Cs after each loss, I had never had major surgery so I was pretty freaked out and worried. I felt in good hands and I am glad about my decision. I still have worries about conceiving after the TAC, etc., but I feel like this was necessary to move on. I’m 35 now and I would like to have to my rainbow as soon as possible. Dr. D gave us no restrictions. We can start TTC (trying to conceive) as soon as we feel up to it. I was actually ovulating when he did my ultrasound the day before the surgery (which I already knew) so hopefully things will stay intact and I will bounce back to my normal schedule soon. Sorry that this post was so long but I wanted to share my experience. Wish us luck on our new journey of TTC with the TAC and remember to stay strong and never give up on your dreams!

Thank you to Dr. D

Tanesha saying thank-you to Dr. Davis post-op.

Happy 2nd Birthday, Lucy

Dear Lucy,

Two years ago, at 12:23 am, you made your unexpected debut into our lives. Until then, and even after, I didn’t know what it meant to be a mother. You taught me so much. Two years later, not having you here with me doesn’t hurt any less. We’ve sort of learned how to live with this gaping hole in our lives, but in some ways, it feels more painful than ever. I think I’ve only just begun to realize what it means to have an entire lifetime of missing you ahead of me. As we’ve watched your cousin Hallie and your little brother grow into beautiful little people, all the things that we’re missing with you have finally started to hit home. The birthdays and cakes, the milestones, the cuddles and kisses are all so sweet, but so painful too. Every event and holiday feels like it’s taking me farther from you. Sometimes I hate that time passes, because it passes without you. I never wanted to leave you behind.

You’re still a huge presence in our lives, of course. We have pictures of you everywhere. We talk to William about you. He knows your name and your face, and when I say “Lucy” to him, he smiles and waves at your picture. I see you in him a lot of times; I think you two would have looked a lot alike. He just turned one, he’s already getting so big. Recently, your ashes finally found a new home in a small pewter heart. It took us so long to do anything with them because we couldn’t bear to think about it. I don’t know if all of your ashes will stay there or not, but for now, I’m glad they’re there. It’s small enough to fit in the palm of my hand, and it warms up as I hold it. It’s heavy, and solid, and more inviting than the plastic box the mortuary gave us. I know it’s not you in there, but I’m still glad your ashes have a nice place to rest now. They’re sitting on a bookshelf in William’s room (and your room too), along with some of your other things. I like to imagine you watching over your little brother there.

Lucy, I’ve struggled a lot this year. I didn’t think I could ever have a harder time than I did when we said goodbye to you, but it’s even more difficult to try every day to be the kind of person I want to be for you. I struggle every day with guilt and shame for my failings as your mommy. A lot of people have told me that I was strong, but I know in my heart that I wasn’t the kind of strong mommy you needed. I could have and should have done better. You deserved the very best me possible, and I didn’t give it to you. I was too focused on the wrong things, and I didn’t know until it was too late. You are so sweet, though. I know that you would know all that and still forgive me and love me. I hope that you know that even with all my failings, nobody could love you more than I do. There are so many things I wish I could change about that time, and I can’t change any of them. The only way I know how to deal with that is by trying harder every day to be the kind of person who would make you proud, and to be the kind of mom who would deserve the precious gifts she’s been given in you and William. I fail a lot. Most days I fall short. I try and try, and I just keep failing. But continuing to try is what it’s all about, right? I know, nobody is perfect, so I’ll just keep on trying to be better, and trying to forgive myself at the same time. Because really, this isn’t about me at all. It’s about you and all the lives you touched. Hopefully, it’s about making the world a little bit better in your honor.

Some days are very dark for me, Lucy, but you are still my little light, and you always will be. I love you, darling girl, with every bit of my cracked, imperfect heart.

Love,
Mommy

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This is the elephant Uncle Justin gave her. He wears a bandaid that she had on when she died. The heart is the urn that her ashes are in.

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Twilight beach print by CarlyMarie.

Dear Doctor

An open letter to all doctors who provide care to women with cervical insufficiency.

Dear Doctor,

Here in the US, there is a lot of heated discussion about abortion. That’s not what I want to talk about, though, because while we as a country focus on that, there is another, quieter epidemic: extreme prematurity caused by cervical insufficiency (CI). Every day, women are losing babies that they love and want due to CI. It’s supposed to affect about 1% of pregnancies. In the US in 2012, there were almost 4,000,000 births, which means that at least 40,000 that year were affected by CI. Not all of the babies born too early will die, but most will, as women with CI tend to deliver their babies before medical viability (24 weeks). That’s a lot of babies lost, but that’s not even the whole story. CI is vastly under-diagnosed, and many second-trimester deliveries attributed to other things (infection and preterm labor, for example) are actually caused by a weak cervix. I get it; CI is notoriously difficult to diagnose. It’s impossible to screen for it, and you can’t be certain that the weak cervix was to blame unless you catch it in the act, or a woman has had multiple second-trimester deliveries (sadly, many women do). Still, as soon as you dive into the CI community, it becomes apparent that the incidence of CI-caused second trimester deliveries is under-reported. Who really knows how many babies are lost to cervical insufficiency every year? Too many, certainly.

I have congenital CI. I didn’t know – couldn’t have known – until it was too late, and I was delivering my first child, my daughter Lucy, at 23 weeks exactly. Too early! It was too early for my little one to be born. She was beautiful, and healthy, and despite not being “viable,” she defied the odds and lived. She lived and lived, struggled and grew, and constantly amazed her adoring mama and daddy. Unfortunately, almost two months later, an infection took her from us, and our world crashed down around us.

You told us what we would do next time. You said we would try it, and “if it doesn’t work, you can always try again.” Those words haunted me. Try again? If it doesn’t work? I’m still trying to figure out how I’m going to go on living after losing one child. If it doesn’t work, I don’t know how I’ll ever survive. If I was going to try again – and I desperately wanted to – I needed to know that I wasn’t going to be condemning another innocent baby to death, or months in the NICU and potentially a lifetime of problems. What I found wasn’t very encouraging. A 75% chance that my baby will make it to 24 weeks? No, not good enough. But I found another option. It’s called a transabdominal cerclage, and while it entails a surgery for me, it also nearly guarantees me a full term baby (95% chance of making it to term when placed correctly). Those are very good odds. In fact, they’re nearly identical to a woman who does not have CI.

So why didn’t you tell me about this option? Why don’t you tell women that they have this choice? I know, you think it’s too extreme. You think my loss was a fluke, or that we’ll “wait and see,” or that we’ll place a vaginal cerclage early in the pregnancy and it will probably work. I know, I’m your patient, not my baby, and you want the most minimally invasive and least risky procedure for me. You say “what if that’s not the problem?” So what if it’s not? I will have had an unnecessary surgery, but I will never regret having fought for my babies. But what if it is? If I found out, for certain, that CI is my problem by losing another child, I would never forgive myself. I would always regret not doing everything possible to prevent it. I know that sometimes you distance yourself from pregnancies that don’t end well, but that means you end up treating my baby as a commodity that can be replaced. I know you’re a good doctor, and you’re trying to do your best for me. But you’re missing something important here. I’m a whole package, and my physical health depends not only on my physical well-being, but also on my mental well-being. After my daughter died, like many other bereaved parents, I thought maybe it would be better to just join her. Just trying again (and again, and again) is not an option for me. So while you want to minimize risk to me, I want to minimize the risk to my heart and soul, and that means doing whatever I can to keep my child safe.

And here’s the thing: it’s not your choice. The way I see it, it’s your job as my doctor to give me a run down of treatment options. You tell me their pros and cons, as you see them, and you tell me which one you recommend and why. Then I decide. It’s important that you tell me about all the options, though, because your priorities are not always the same as mine. When you leave out an option that you don’t think is a good one for me, you’re making the choice for me, because you don’t think I’m capable of making the “right” choice. You might find that I won’t make the same choice you would make for me, but you’d better believe that I will consider all my options and choose the one that is right for me and my family. So please, stop treating us like children, and let us decide for ourselves.

Please stop treating me like I’m crazy to go through an extra surgery to help guarantee my child a healthy start. Don’t you understand that I’m already a mother? What mother wouldn’t do that for her baby if she could? Please don’t act like I’m being unreasonable and extreme. Do you know what’s extreme? Holding your child as she breathes her last breaths, her skin growing cold beneath your tears and kisses. I’ve done that, and I would have endured a hundred surgeries to prevent it. If you’re a parent, you already know. I would have died for her. Don’t tell me that a surgery with less risk than a c-section is too extreme.

Doctor, I love and respect you. You’ve spent years educating and training yourself. You have a hard job, and I know you’re doing your best. But please, please trust us enough to give us this choice. And please, above all, stop telling us that we can “always try again.” Even if we have the physical, emotional, and financial wherewithal to try again, nobody can replace the baby we’ve already lost. That baby is not a fetus, or a “product of conception,” or a miscarriage – she was my heart, and my love, unique and beautiful and completely irreplaceable.

Love,
Jill

DSC00356
This is Lucy. This is what a victim of CI looks like.

Stories of Strength: Polly’s Story, Part 2

When we left Polly last, she’d just seen her precious Gabriel in the NICU for the first time. Sadly, Gabriel was never able to come home from the hospital, like so many other babies born too early because of IC. Thank you again, Polly, for sharing what I know was the most difficult experience of your life.

If you’d like to share your story, please send it and any pictures to tac.questions@gmail.com.

 

After effects of everything didn’t hit yet, until the ride home. It was a 2 hour trip to my dad’s house, a lonely drive alone. All I could think to do was call my best friend, screaming. She didn’t know, hadn’t read, all she knew I was screaming at her. Finally I was able to calm down just enough to tell her, the baby is dead. That is all I know to say. The baby is dead. All I heard from the other end was her screaming and crying. She wasn’t able to meet him. Something I regret so much, you would think my best friend would be able to meet our first child. Nope, she met him 2 days later. The first night was like a blur, all we knew to do was lay in bed and stare off into space. We cried, blanked out, and cried more. One of the worst Wednesdays of our lives.

Thursday is when everything started to hit home, the funeral home. We had to make it official that our son died. We had to choose between this design and that design, like we were picking out carpet color. It seemed so wrong, why are we acting as if this was a remodel? It seemed like hours upon hours being there. Finally we were able to finish things and leave. We were escorted out to where he would be laid to rest. It was a blur again, like a dream that wasn’t real. So many babies were there, just rows upon rows. Some dating back to the 70’s, can you imagine losing a child in the 70’s and still dealing with it? A fear/pain came over me: that is how I’m going to be. In 30 years I’m going to be here, dealing the same way. I’m going to be “that” woman, the one who lost her child. Never again will I be known as Polly, rather that woman.

Everything rushed to me all at once when we got back into the jeep. My first true break down, all I could do was ask why. Why did it have to be me, why did I have to lose my son after we fought for him? So many questions, but so few answers. Then Friday came, the day I will never forget. I was the first one there, the director asked me to come view him to make sure thing were to my liking. My liking? Again, making it seem like we’re remodeling our home. Walking through the far double doors I turn to my left and there he was. There was my son, in a casket. Going up to him, my heart beating, I started to sweat like I was in an incubator. Then I’m there, looking down at him. He is so big, handsome, and peaceful. My beautiful child, my miracle baby, the sole of my existence. All I could do was stare at him, stare at the life I created. The life that was taken away from me, the life that should not even be here right now. That should still be in my belly growing stronger. My baby should NOT be laying here!

The rest of the day was a dreamy blur. Hour after hour I stayed more outside. People coming and going. Giving me condolences, sympathy. The one phrase I heard most that day, “I don’t know how you do it, I couldn’t imagine being in your situation.” It was one phrase I could not understand, why would you even consider being in my situation? It’s something no should ever have to think about, or even consider. Then it was time, time to take him to his final resting place. I had to come to terms, he was gone. I was about to let him go forever. I would never see my son again, after this day he would only be a memory in my mind or pictures I have. My son, a memory of the past. Damn it.

Walking to the resting place, it took everything I had not to fall. Not to just give up and fall down to the ground to beat it. We got there, Robby and I sat in the front row. I don’t even remember who we were sitting with. Only thing I can remember is digging my head into Robby’s shoulder. After the preacher man did his thing, we decided we wanted to do ours. We had a particular song that we wanted to dedicate to him. A song that helped portray what we felt, how we felt: Angel’s Son by Sevendust. How he was fighting every single day. . . . During the song, we did something the director said no other parents have done. We sat there and watched him be lowered into his resting place. During the song, he was lowered completely and the fake green sheet put over. My son was gone, there was no turning back now.

As we stayed back to take pictures, again so many came up to me. I don’t remember what most said after the lowering, really didn’t care. All I cared was to figure out how were we going to live? How are you to live after having such a love be taken away? At one point I looked off in the cemetery and wondered to myself, do I even want to? Where would I be at, could I be close to him? So many thoughts ran through my head. I never shared them until now. So many would had taken it so negatively and probably tried to interfere. I knew in my heart that I wouldn’t do anything, but the thoughts were there. Running rampant in my mind, what was the easiest way? Pills? Cutting? I knew that I wouldn’t use a gun; that scared me too much. I had so many scenarios through my head of what I could do, how I could do it, and what letter I would leave. The thoughts seemed so pure, like it was natural. The thought of not having Gabriel with me, never holding him, getting to hear his voice, never getting a kiss or hug from him was something that put the darkest shadow in my heart.

After that we go out with family members to try to start coping, it took our minds off a little bit but it lingered so much. When we got home, we tried to talk. Not many know how hard it is to talk even about the simplest things when you are so traumatized by an event. You don’t know if you want to cry, scream, smile, laugh, or punch the wall. We made it through the next couple of days, holding each other. Trying to be with each other as much as we could. We never knew just how much we loved or needed each other.

We had an OB appointment October 23rd, my birthday actually. We decided we wanted to give Gabriel a sibling. So many were against it, against the thought of us “replacing” Gabriel. Little did they know, you can NEVER replace that boy! That boy is my first born, my first love. Despite what everyone said, we went ahead with it. We got Provera to start my period, and Femara to start again. November came with my period, we were excited. Maybe soon we will be pregnant again, and Gabriel will have a sibling to look after. November cycle came and went, along with December. We were sort of hurt, but we knew it would happen. January cycle came and went. Then February cycle, I had a feeling this was it. I knew in my heart this was it. Amazingly, March 1st, 2013 we found out we were pregnant. I knew it! That was our cycle, we were so excited again. We went to the OB as soon as we got a positive pregnancy test, beta levels were 9. I caught it just after implantation! Progesterone was started, we knew this was it. A week later all symptoms stopped. I got worried, so I took another test. Negative. My heart sunk so far into my stomach I thought it was coming out. I decided that night, we’re going to ER. I told them the story, a u/s was done. Nothing. Nothing was there. Beta came back at a 2. I was no longer pregnant, the miscarriage already started.

It started all over again, the pain of losing another one. Most don’t think that you can’t have hurt feelings, you were only pregnant for less than 2 weeks. You don’t even have a chance to bond, but believe it or not you do. You bond with the baby as soon as you see the positive pregnancy test. That put a strain on me, what am I doing wrong? What is wrong with me? I didn’t take Femara that cycle, I let everything pass naturally. The worst feeling is when I passed a clot, I had a feeling that was it. That was my baby. My baby was there, in the water. I had to flush my baby away, I had to see another baby be taken from me. My heart got darker.

In April I went back to my OB that helped us get pregnant with Gabriel. He was saddened by the loss of Gabriel, and I was diagnosed with IC officially. He said he was determined to get us pregnant again. That I will have a baby, a living child to take home. So in the middle of April we started again. In May, I got another faint positive. Oh I was so scared. Then we found out, negative beta. First false positive. Another cycle down. June cycle came, another faint positive. Another negative beta. Second false positive. This crushed me so badly, I wanted to give up. The next few months, all negative. Cycle after cycle I started to feel more crushed and beaten. Every month, my charts showed ovulation. OPKS showed strong surges. Nothing at all. So many questions started to arise, what is wrong? In November, I decided to request another HSG be done. At first my OB was denying it, but after a careful talk finally got him to do it. First of January we were able to finally have one done, hoping for answers. All we got was more questions. My HSG was perfect, they said you could not ask for a better result. Tubes so clear the dye flowed so freely, uterus looking perfectly shaped. Crushed again. No answers to our questions. So we decided to try 2 cycles of Ovidrel a friend had sent me. It was a lower dose, so I wasn’t afraid of OHSS. January cycle we did it, nothing. The only thing I got was a very weird period, one I wasn’t even sure if you could call it one. Then we tried the second one, feeling hopeful. Nope again all negative. I thought for sure this was it again. Here comes my period, very heavy and clotty. Figuring it was from the weird one last cycle.

So here I am now, waiting to start using OPKS. Waiting to track ovulation to see if this will be another failed cycle. You would think that after everything, we would have a child by now. So now we’re deciding, when is it time to stop? When do you finally give up the last pill? Everything has had its ups and downs since October 2012. There are times that I go back to those thoughts, but I have to pull myself out of them. I started back to university August of 2013. I decided that I needed to give Gabriel a reason to be proud of me. Right now I’m in my next to last semester, I graduate December 2014 with my Bachelor’s degree in counseling. Even though I’m lost most days, I’m proving to myself every day that I’m stronger than what I thought the previous day. I hope by this time next year, I will have a beautiful child to love on. That I can hear them cry.

The Big Three

Here’s the most basic contact information for the big three TAC doctors in the US. I’ll keep updating this post as I get new information. If you are specifically looking for a doctor in California, I keep a list of all of the doctors I know of who do TAC/TVCIC in the state, and everything I know about them. Email me at tac.questions@gmail.com for more information.

Arthur Haney
Pre-pregnancy and in-pregnancy TAC, placed traditionally (laparatomy, no laparoscopy)

Currently practicing in Chicago.

ahaney@babies.bsd.uchicago.edu

Center for Reproductive Medicine and Fertility
333 S. Desplaines Street
Suite 201
Chicago, IL 60661
Office: (773) 702-6127
Appointments: (773) 702-5161

The University of Chicago Medicine
5841 S. Maryland Avenue, MC 2050
Chicago, IL 60637

George Davis
Pre-pregnancy and in-pregnancy TAC, placed traditionally and laparoscopically via DaVinci robot; In-pregnancy TVCIC

Dr. Davis has retired, sadly, and is no longer practicing in either New Jersey or Tennessee.

askdrdavis@aol.com

 

 

James Sumners
Pre-pregnancy and in-pregnancy TAC, placed traditionally and laparoscopically via DaVinci robot; In-pregnancy TVCIC

Currently practicing in Indianapolis.

james_sumners@yahoo.com
FB: https://www.facebook.com/DrJamesSumners

Center for Prenatal Diagnosis
8081 Township Line Rd, Indianapolis, IN 46260
(317) 415-8070

Keep in mind, there are other very good surgeons who place the TAC and TVCIC. These three have the most experience of them all, but that doesn’t mean you have to see one of them. Also, please remember that all three of these surgeons are incredibly busy. I have no idea how they do all the work that they do, let alone have a life. They save hundreds of babies every year, so don’t get too frustrated if they don’t get back to you immediately, or even if you don’t get a response. It’s not because they don’t care. They care so much and they help such a huge number of women that sometimes emails or phone calls slip through the cracks. I promise you, they’re doing their best. If it’s critical that you reach them as soon as possible, usually calling is a better option.

Stories of Strength: Brittany’s Story

Brittany, whose cervical insufficiency was compounded by treatments for precancerous cells on her cervix, had her TAC placed as an emergency procedure late in her pregnancy. Unfortunately, the damage was already done. This is one way that a TAC can fail, and one option for how to proceed when it does. Thank you for sharing your story, Brittany. You’re a strong mama, and we wish you the very best.

If you’d like to share your story, please send it and any pictures to tac.questions@gmail.com.

My name is Brittany and this is my story. I was 19 when I found out I was pregnant and while I was happy to find out I was carrying twins, I also had found out I had pre-cancerous cells in my cervix. Due to a weak cervix, I had my twin boys at the gestational age of 24.5 weeks and they had to stay in the NICU for four months. I had to have two surgeries on my cervix and was only left with 9mm functional cervix and was told I am lucky to already have my kids.

Fast forward to 2013, my husband and I wanted to try for another baby because our kiddos are now 5. Remembering what the other doctors said about my cervix, I told my new doctor I would need a cerclage done. I was about 6-8 weeks pregnant when I started to have some bleeding on and off but my cervix was still shut. But I kept insisting bleeding is not normal and my cervix is barely there . . . Unfortunately, at 15 weeks I went into full on labor and that’s when the military doctors FINALLY believed me and my cervical issues. So they rushed me to a hospital in Savannah, GA. I stayed there over night and all contractions stopped. We were referred to Dr. Davis but had to drive up to NJ to be seen for the TAC (trans-abdominal cerclage). Two other doctors said I was too far along to have it done, but Dr. Davis had hope as long as we could get there.

We made it up there and had an amazing surgery. I got to see my baby, got the TAC, and Dr. Davis was amazed at how well it had gone. I went from 9mm to 3cm. He told me it looked great but we weren’t out of the woods yet. Mind you I had been bleeding and while Dr. Davis was doing my TAC, he couldn’t see why I was bleeding/clotting. Sadly, at 18 weeks my waters ruptured which is known as PPROM (preterm premature rupture of the membranes). The TAC did not fail – my cervix never opened – but since I was bleeding, the blood was like sandpaper and tore my membranes. I was told to abort our baby, but I had faith and had heard so many stories of fellow ladies going through the same thing, so I chose to be on strict bed rest. But, on week 19+6 I went into labor and had to go to the hospital. Since my daughter was not at a gestational age where she could survive, Dr. Davis told my doctor to just go in and cut the TAC instead of having a c-section since a c-section would further damage my uterus. I delivered the next day at 20 weeks. The nylon “string” he used is still around my cervix. I am currently trying to see Dr. Davis again to have it removed and get a pre-pregnancy TAC to eventually try again one day for our rainbow baby. It is not a guaranteed fix but I know it will hopefully help get me to a gestational age of a healthy baby. I hope my story can help in some way or give information on some questions you may have. Thank you for reading my story. Please keep your fingers crossed for us that everything goes well in the future and we get our rainbow we so desperately want.