Monthly Archives: May 2014

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.

Felicity

Felicity 2

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!

Felicity 3