« Nasty Diabetes Trickery. | Main | Thirty-Two/Thirty-Three. »

Guest Post: Pregnancy, Miscarriage, and Type 1 Diabetes.

Lovely Kate and "The Hub."Today's guest post comes from my dear friend Kate Boylan, who has experienced a journey with diabetes, pregnancy, and miscarriage.  I'm grateful that there are people like Kate who put it out there like this, even when it must still feel raw.  I hope there's some healing found for her in sharing.

*   *   *

“It has absolutely nothing to do with diabetes.”



That is what the renowned Boston-area high-risk obstetrician reported to me and my husband right after she told us that I was miscarrying my first pregnancy. She went on, “Based on the irregular heartbeat, and the lack of growth in the last week, I am almost positive that this is not a viable pregnancy.”



The pregnancy I had been dreaming about being “viable”… well, forever.



Also: “Viable.” It’s kind of a harsh word especially when talking about life, no?



The pregnancy was almost a little too perfect: I’d been told from my endocrinologist and myriad other doctors that I was the picture of health for about a year. I started a new job this September that finally paid a solid, professional salary commensurate with my experience and master’s degree. We were still able to finagle our trip to Ireland, Scotland and England that we had been planning for years in October. I turned 30 on that trip and celebrated with wonderful friends. After getting home and easing into the new job, we thought, “OK. Now’s about as good as a time as any to try not trying to not get pregnant.” (That’s a whole heck of a lot of double negatives: point is, we would try not using birth control and see what happened.) We didn’t want to get all stressed about trying, so, we just let things happen without really focusing on what could conceivably (bad-dum-ching!) happen, or not happen. And, well, pregnancy happened pretty much immediately.



After a few weeks of serious PMS symptoms, it dawned on me that this might not be my wacky cycle being later than usual (thanks to genetics, and maybe diabetes—who knows?—my cycles are typically around 40-45 days long). It was the night before Thanksgiving, and being tired and cranky and questioning why on earth I offered to host Thanksgiving when I was tired and cranky, I went to CVS on my way home from work to pick up a few pregnancy test kits. I bought two different kinds, because, I don’t know. Why not “be safe”?



I got home, and used the first kit. And, then I used the other kit. (I thought to myself, “Oooo! This kit turns pink when you pee on the stick!” Sometimes, it’s the small things in life.) And, after waiting the prescribed 30 seconds or five minutes (I just know it felt like nine hours), both of them had very distinct “+” signs indicating “PREGNANT,” according to the directions.

I called my husband.

“Hi. Where are you?”



Something in my voice apparently set off the pregnancy alarm bells.

“Are you pregnant?”



“Uhhh… Yes. It would seem that way. Can you come home?”



Again: almost too easy. Too good to be true.



I called my endocrinologist’s office immediately. Then my regular OB/GYN. Then the high risk OB/GYN. Then my PCP. I got many congratulations, and advice, especially from the endocrinologist about what my blood sugars should look like, and adjusting my basal rates to help me get to staying between 75-95 mg/dl all the time. Thanksgiving happened along with many, many naps, and my husband and I started thinking about moving, the baby’s room, names, schools, and momentous occasions to come with our growing family.



After two grueling weeks, it was time for the first ultrasound with my regular OB. “Ok, so according to your last period, you should be at about eight weeks one day,” Dr. K. said. She then pressed on my belly with the wand, kept pressing and digging and trying to move "things" around. She kept saying that my uterus was flipped back, which was totally frustrating, because: really. What does that even mean? I asked her, and she explained something about my bladder being full and that it would be "upright" at ten weeks. I felt like I was Liz Lemon (yet again) with her misshapen and "uninhabitable" uterus.



The doc left and came back a few times, which only freaked me out big time, then finally came back in and said that she made me an appointment for an internal sonogram (so much fun!) the next morning when they would be able to get a clearer picture of everything. We then got the listeria talk, the Downs Syndrome risk talk (it's awesome being two months over the 30 threshold), and the "I'm very hopeful everything is fine, given your symptoms" talk. We agreed to talk post-sonogram in the morning, and my husband and I left relatively silent, but hand-in-hand to have a quiet, reflective night at home.



I could barely sleep that night since all sorts of terrifying scenarios were playing in my head, and I bolted out of bed to shower and get up and out the door in the morning. I go to the radiology lab (my husband couldn't come with me because of work-related travel), and take a deep breath as things "get started." (Being a woman is SO MUCH FUN.) The radiology nurse explains that it looks as though I am about five and a half weeks along, and that I wouldn't be able to hear a heartbeat until at least six weeks. The radiology doc comes in, and explains the same thing, suggesting I come back in a week. So, somehow, I did not absolutely wig out, and made another appointment and went to work.



Then I get a call from my doctor, who explains, again, that it looks like I am five and a half weeks along, and that she is not very optimistic given how long I have had symptoms and given we thought I was about eight weeks along. Dr. K. said, "The chromosomes probably didn't line up correctly. When I say that conception and the manifestation of DNA is like origami, I really mean it, Kate. Everything has to line up and be perfect. This isn't anything you did; be sure of that." Then she explains, AGAIN, that the only way to be sure was to have another sonogram next week to see if things change, given that there is a slight chance the dating of the pregnancy could be off given my wacky cycles. If they don't change: it's a miscarriage. If not, then, well, life is good. Plain and simple.



The next week, I had another sonogram indicating I was at six weeks and one day. Dr. K. noticed I would see the high risk OB the next week, and said, “This is good news! Since there was growth, let’s see where you are next week.” And then I saw Dr. T, the high risk OB/GYN, that next week, and well, you’re up to speed. I had a one last sonogram to make sure I was miscarrying, which confirmed internal bleeding and an even slower heartbeat, and then dilation and curettage just before Christmas.



That was it.



I can't tell you how many questions I have asked myself, and thoughts I have gone over time and time again, "Was that extra glass of wine when I must have been days pregnant necessary?" "Even though I have been kicking ass with checking and blood sugars, I did have that crazy 395 six weeks ago. Might that have effed with the chromosomes lining up correctly?" "Even though I have been kicking ass with checking and blood sugars, I've been waking up over 100. Did that cause a miscarriage? How does that bode for the future if we want to try again?" "I sit with my laptop on my knees with my legs up. Are microwaves a problem?" "Did I not catch a low in time?" "Dammit. I should have looked into getting a Dexcom MONTHS ago. What if I am high and low and don't know it?"



It's heartbreaking, and I can't help but feel like this is indeed my fault. Dr. T’s words of “This has absolutely nothing to do with diabetes. Your A1C’s are perfect—they are what really matter, and you have done everything right” play on a constant loop in my head daily. I can say for sure that I did everything to the best of my ability, but I still feel as though I have failed in some way. That my body failed me again. 



Isn’t a life with diabetes enough, Universe?



It is weird to think about the fact that I am in perfect health, and that “this has nothing to do with diabetes.” EVERYTHING in my life has had something to do with diabetes for 26 years. How could something so integral to my every day really have nothing to do with why this pregnancy didn’t work? It just seems so unfair. I kind of want to blame it on something, and diabetes seems like a perfect go-to. I understand, and am glad that the medical community thinks I am in great control and that it may very well be true: it might not have had anything to do with diabetes. It’s just such a huge conundrum that goes against thinking that I have had for almost my entire life.



So, like trying again (and again, and again, and again!) to beat the lows and highs of diabetes, my husband and I will actively have to try again for there to be a next pregnancy. I will keep trying my darndest to be “the picture of health,” and even though I am just about ready to give up and not care, I hope that the Universe has some good, healthy things in store for us. As Yoda wisely said, “Do or do not. There is no try.” Well, as much as I love our short green leader, in this case, I will “do” trying.



In a way, it has everything to do with diabetes.

*   *   *

Kate has been living with type 1 diabetes since the age of four, and currently lives in Boston with her partner in crime, "The Hub."  She's self-described as:  "... wayyyyy into music, I try to maintain being athletic and stuff; I love food and cooking and good red wine, and single-malt scotch nice and neat, and baking, and art and museums, and movies and film theory, and libraries and old books, and family and friends and traveling everywhere and people. Whew, right?"  You can connect with Kate through her blog, Tenaciously Sweet.

Comments

Kate -- I am so very sorry. Love you. M

This brings back so much for me. When my husband and I got married, I found myself pregnant 6 weeks later. We weren't trying and we weren't preventing, a baby was welcome to us. We were overjoyed.. then the bleeding began and the dr actually gave me false hope but in 3 days I passed the baby naturally at home. In order to process the feelings we did our best to experience the moment. I was 8 weeks along and we got to hold the baby in our hands. He/She had the beginnings of limbs, a tail, and dots for eyes. It was actually kind of cool to see this. I was sad but we took pics, made a video, and buried the baby in our own ceremony in the back yard and lit candles for a week to remember the baby we lost. Dr wasn't happy we handled it privately,he wanted to dissect it to find out what went wrong. I don't care what happened, it happened, let's try and move on.

I found a support group on a newsgroup and found a lot of peace with the other members. I had no idea how public those things are, how naive I was.. so turns out the pics of my embryo I thought I shared privately were not so privately and the anti 'breeder' newsgroups grabbed it and made fun of me with it. A quick search came up with more info on me and they did all they could to make me feel like it was all my fault. Such a dark time in my life.

A year later I finally got pregnant again with my son and 5 yrs later, my daughter. I just wanted to end with the good news to encourage the author of this post. Miscarriages are super common even for people with no other medical issues, we just don't hear much about it as people like to keep it private. You're not alone and it doesn't mean you can't have more. I wish you the best and a great pregnancy when it does happen for you.. which it will!

I am so sorry for your loss, Kate. You are so brave to share your story and I, like Kerri, really hope it helps with your healing. All the best to you & your husband for the future.

I'm so sorry Kate, and the fact is, it probably doesn't have anything to do with diabetes or that glass of wine, it's just shitty bad luck. And that sucks.

Kate, I am sorry for your loss. I also miscarried this past October. MY miscarriage sounds exactly like yours. The first appointment they could not hear the heart beat. Second appointment you are five and a half weeks not eight weeks. The next week there was some growth and development, and the next week there was nothing. I too feel like it was my fault. My doctor assured me it was not. I have decided after months that it is what it is. I have two beautiful daughters ages 9 and 11 and am so thankful for them. It is so nice to know we are not alone. I know you will have a great and successful pregnancy. Hang in and keep trying. Diabetes does not get to decide, we do.

What a heartbreaking read. Kate, I wish you the best in trying again and hoping that you can quiet that voice screaming "diabetes did it."

Kate,

My heart breaks for you. I've met you only once and feel like I've known you a million years (not that you're a million years old. Then you'd be a dinosaur, and I'd be afraid of you).

I'm not going to tell you it wasn't your diabetes because it doesn't matter. All that matters is that you went through this, and we are here for you to be sad about it. You are strong and the day your see your baby in your arms that strength will be proven.

Abby

Aw, Kate, I'm so sorry. But I'm glad you're sharing it here.

You're in my thoughts!

Kate -
Thank you so much for sharing your story and I am so sorry this happened to you.
Sending lots of love, strength & healing your way!
Xoxo

Oh, Kate... I'm so sorry. Those words "has nothing to do with diabetes" - meant to be reassuring to a degree, but I can only imagine they do nothing to lessen the hurt of what's happened. Thank you so much for sharing your story here. Thoughts are with you and your husband now and for the future.

Thank you so much, everyone. Your words are amazing, and have in a weird way, made me so happy. The love of this community is delightfully astounding. I am happy to have shared this story with you, and appreciate, everyday, you sharing yours with me (and the world). Here's to all good things for all of us in 2013!

Being Type 1 for over 15 years, I knew in my gut I had fertility issues. After spending 3 years and thousands of dollars at the fertility clinic, we had our daughter in April of 2011. It was pretty much a given that I would never get pregnant on my own, so we didn't do anything to prevent it after she was born. Imagine our shock and elation when I ended up pregnant 6 months later! Joy cannot describe the feeling. It quickly turned to heartbreak when we went in for our 8 weeks check up and there was no heartbeat. Even worse, no sign of impending miscarriage - my body still acted like and thought it was pregnant. (And so did my blood sugars, blast it all.) I gave it 3 more weeks to try to miscarry "naturally," then finally gave up and took the meds my OB recommended to move it along. Awful awful awful. For many months, I was emotionally wrecked. I empathize with you remembering those heart-wrenching years when we were trying to get pregnant with our daughter, and then feeling the loss of the miscarriage even after we already had a child. I hope hope hope for you, and hate you have to go through this time of longing and want for a child. Nothing anyone says can truly make it feel better - the pain is all yours to bear, and you can only hang on to hope, as weak as it can sometimes be. *HUGS*

So sorry for your loss. Miscarriage is a terrible loss to overcome when so many dreams and expectations have already started to manifest themselves in your mind and conversations with your husband.... i hope you heal and are able to silence those diabetes demons in your head! Michelle S.

Kate - I am so sorry. Thinking of you.

Kate - I admire you, and especially now for sharing your experiences here. Much love and happiness to you both.

Aw shucks, Kate. I'm sorry.

You are so brave to share your story. Thank you.

So sorry about your loss, Kate.

In the summer of 2011 we decided to give pregnancy a try, also just by omitting contraceptives to see what happened. Success was immediate, but at 9 weeks, just a couple of days before I had the first ultrasound scheduled, I started spot bleeding. I wasn't to worried at first, but then one night I woke up in pain, and had no doubt that I was miscarrying. I never bleed that much in one night before, and the next few days with appointments to confirm what had happened as well as passing the whole thing, were quite painful. We were also told it had nothing to do with my diabetes, and frankly that was also my take on it (my biomedical degree helped me focus on facts rather than suspicions). We decided to just continue, and less than 3 months later, we had two lines on a pregnancy test again. This was just before Christmas, but because of the miscarriage, we didn't want to tell anyone about the pregnancy before we were sure it last. Thus, the family wasn't told until I was almost 19 weeks along. August 12th 2012 our beautiful baby girl was born, small but perfect :-) Whether she'll have any siblings depends uopnåelige her parents' ability to repress the memories about the whole diabetic pregnancy struggle ;-)

Best of luck in conceiving again :-)

Kate - My husband and I have been trying for 2.5 years. I finally made the appt. for the infertility dr on Dec. 17. They took blood, did a sonogram told me to come back for more blood tests etc. I was late in this month. We bought four pregnancy tests - two with a very "faint" line and one that digitally said NOT PREGNANT. I called the Dr and went in that next Tues. They took blood and told me I was pregnant - about 5 weeks along. They asked me to come back to check the HCG levels *they are to increase every day* and well last Friday, the dr called to tell me my HCG levels had gone down to 50 and the pregnancy wasn't viable and that I should begin my cycle this next week. Yesterday was a hard day of horrible cramping... they too told me it wasn't diabetes related. But you just never know. I'm 35, diabetic for 22 years. And it never gets easier/better. I will pray that your joy comes soon!

Hi Kate,

I am so very sorry for your loss and I hope you are able to heal.

Like you, my first pregnancy ended in a miscarriage at 12.5 weeks. It was absolutely heartbreaking. I too had difficulty not blaming myself and my Type 1 diabetes. My family doctor and endo assured me that my diabetes had very little to do with. I tried to believe them. Like you, I also searched for reasons why this happened: I did an inversion at yoga when I probably shouldn't have, I was stressed at work, I wasn't getting enough sleep. One thing my family doctor said, which really resonated, with a viable pregnancy I would be shocked about what a healthy pregnant body could do. Exercise isn't a problem, reasonable stress isn't a problem--your body and baby can withstand a lot.

This ended up being very true. Despite having a high-risk pregnancy, I exercised and continued working at my semi-stressful job up until 37 weeks.

The other thing that I have taken from the whole pregnancy experience is that you can't control everything. I have been so used to planning everything down to the smallest detail. You cannot do this with pregnancy, childbirth and parenting. I think it is an important life lesson in living in the moment.

Chin up.

Carrie, I am so sorry to read of your loss. My heart breaks all over again reading anyone's story of miscarriage, and as many have noted here and to me personally: be kind to yourself and take the time and space you need to process. Please know that I am here to help answer any questions you might have. I pray your joy comes soon, too!

Kate - I'm very sorry for your loss and the experience you've been through, but thank you for sharing it. I understand what that took for you as sadly I have been there too. And like you, I think I blamed diabetes because it was something to blame.

The happy ending to my story is that I now have a gorgeous 14 month old son. And despite two previous losses, surprisingly my pregnancy was not any more fraught than the ones before. Full of worry, of course, but total joy when I got the positive test too.

I recently decided to edit and publish many previously private entires from my pregnancy journal on a new blog - including some thoughts about miscarriage. I'm sad in a way that I wasn't ready to do it sooner, and really applaud you for talking about something that is sadly so common, but so frequently kept quiet.

Dear Kate-

You are so brave to share this. My heart aches for you and your husband. I can't even imagine how difficult this must be for you.

Know that we love you, and you are never alone.

I am sorry for your loss. So many of us can relate to where you are now.

I have been a Type 1 diabetic for 33 years. When I first got pregnant, I was diabetic for 20 years. I had an early miscarriage as well and, like you, couldn't help but think that it was my diabetes or my fault.

The upside of this story is that 13 years later, I have not 1, but 3 beautiful daughters. Each time there was a miscarriage, a successful pregnancy followed. After my second daughter was born, I suffered an ectopic pregnancy. Yet again though, it was followed by a successful pregnancy.

The universe has so many unknowns for all of us. And just when you think things are going your way, it loves to throw you a curve. All you can do is keep swinging and hope you hit it out of the park!

kate,

i am so sorry to hear of your miscarriage. you are so brave to share your story online. I know we never got to meet up before I moved out of JP, but i'm still not too far away from WR so if you need ANYTHING, need to vent, need to talk to another t1d just email me. Also - I am pretty sure I know "Dr. T" that you referenced in your post - and she is fantastic and will be your greatest ally.

best to you,

kate (type 1 momma)

So sorry about your miscarriage. It is a horrible experience. I had two healthy kids then miscarried two - always wanted a big family of at least 4 but have had to come to terms with stopping at 2, now (I'm 40+ and hubby didn't want to keep trying). Thankfully our 2 are bright, healthy and generally all-round perfect (says proud Mummy!), except for Isabel's diabetes, but we don't let that impact anything and it certainly doesn't stop her from being perfect!!! When I was getting over miscarriage no. 1 I kept thinking of my good friend, who is younger than me but has had 8 miscarriages plus one ectopic pregnancy - she managed to carry one baby almost to term between all that lot (Isabel's BFF Charlotte) and then had IVF, lost another 2 or 3 eggs that didn't implant properly and then gave birth to triplets 2 years ago!!! So don't lose heart - it can be done. God bless you and good luck with your next pregnancy. I'll be thinking of you. xxx

When one is in pain and grieving, the best thing is to listen. Kate, we are listening.

Your story brings many of us back to our own moments of deep suffering and loss. But some of us have lived enough passage of time to know that the the wound becomes scar. It is still there, but not as raw. It may be hard to realize now, but tuck it away for later, much later.

I wish you success in your sacred wish to create a family.

Wow, Thank you for sharing. I hope that you and your husband are successful the next go round. I want to thank you personally, I have had this same experience 4x (over many many years) and I have NEVER been able to quiet the voice of "Damn Diabetes!", even after we had proof and testing that it may be due to other anomalies. It is so helpful to not feel alone.

Have you been checked for the MTHFR gene mutation? It's related to miscarriages and autoimmune disorders (type 1 diabetes)....a large percent of the population has it, but if you have it, you can do things like take methylated folate & B12 to work around it. If your doctor won't test you there are on-line labs that will for about $99...

i am so sorry for your loss. thank you so much for sharing your story here. all the best to you and your husband.

Thanks Kate for sharing your very personal story. I am touched by your pregnancy/miscarriage journey as I too had a very similar experience with my own miscarriage and living with type 1. It feels good to know that there are other people out there w/ type 1 going through similar life situations.

Thank you for sharing your story and helping other type 1 diabetics who have miscarried (like me) feel less alone. You echoed so many of the same thoughts I had--especially the nagging that it HAD to be diabetes related somehow after 25+ years of living with t1 and that strong and sad and frustratingly sad feeling that my body has failed me again.

I hope we have healthy happy babies in our future!

Kate,
thank you so much for sharing your story. My story is similar to yours. Type I for 12 years, married for 7.5. I have spent several years preparing my body for pregnancy: getting those pesky A1cs under control, working out 5 times a week, eating healthy. Last fall my endo and high risk ob gyn finally gave us a green light. It took us 3 months to see the oh-so-desired-and-prayed-for faint pink lines on a pregnancy test (just days before my birthday and Christmas). We were elated with joy, unable to keep the supposed secret from our family and closest friends over the holidays. However, in January during our 1st ultrasound at 8 weeks , my dr. couldn't find a heartbeat and the baby was only measuring 5 1/2 weeks. Two weeks later I unwillingly learnt what it meant to have your heart sink into your stomach. During a repeat ultrasound, dr. saw some growth but no heartbeat despite intensifying 1st semester symptoms other women tend to complain about and I welcomed. Another week later, dr confirmed it was not a viable pregnancy and laid out the options: wait to miscarry naturally, pills to speed up the natural process, or D&C. I decided to wait it out as I began spotting before the third ultrasound. I miscarried on my own last Wednesday. It was by far the most sad and overwhelming, physically and emotionally, thing I have ever been through in my life.

Both my endo and ob gyn keep repeating it wasn't related to my diabetes, but just like you I can't shake off the thought that it has everything to do with diabetes. Despite perfect A1cs and CGMs and obsessive 12/day finger sticks, somehow I missed that one low or that one high that did irreversible damage. Physically I seem to be recovering well, emotionally not so much. While I used to brag that I never let diabetes stop me from achieving anything I put my mind to, this experience has left me feeling hopeless and powerless. I go from wanting to get start TTC tomorrow (although my ob recommended waiting 3 cycles) to never wanting to try again because I am not sure I can handle this emotional devastation again.

I am thankful for every comment that included a story of successful pregnancy despite diabetes and miscarriages. But I am still left wondering where do I go from here: do or do not?

I had a miscarriage in 2009. I didn't ask the medical examiner why. I just tried to forget it. I've had type 1 diabetes for almost 28 years now. At that point I had really screwy readings, but I was told by the OB/GYN that it could have been the diabetes...or not. That bothered me so much, because if I don't know what the problem is, how am I supposed to prevent it?

So, I'm glad to see that you have been successful with this! It gives me hope that I can have a healthy pregnancy when the time comes!

Post a comment

(All comments are moderated. Thanks for your patience!)