Monthly Archives: March 2014

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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Lucy Donald 063

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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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lucy

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

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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.