Pregnant with Disabilities: Type 1 Diabetes

Today’s post is the third and final in this week’s series devoted to pregnancy and disabilities. Giving Birth with Confidence is contributing these posts as part of the Bloggers Unite event, People First: Empowering People with Disabilities. The blogging event aims to raise awareness about empowering people with disabilities by sharing stories around the ‘Net in support of people with disabilities and the groups who work to empower them.

Kerri is a new mom to a beautiful baby girl and has been living with type 1 diabetes since she was six years old. The following post, which discusses pregnancy with type 1 diabetes, was originally published on Kerri’s blog, Six Until Me, on February 19, 2010 and is being republished with her permission.

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It’s All Rainbows and Unicorns

I love BSparl [nickname given to baby in utero, stands for "Baby Sparl"-- Sparl being Kerri's last name].  I love her little feet and her pouty lips and that feeling I get when she rolls around inside of me.  I love knowing that my daughter is just a few weeks away from becoming a part of our Sparling family, and I know that every moment of this pregnancy is completely worth every iota of effort and worry.

That being said …Rainbow not included.

I’m starting to lose my mind a little bit.

I’ve blogged about the details of the doctor’s appointments, and the ultrasound scans, and the way that diabetes has impacted my pregnancy, and vice versa.  But by the end of my posts, I feel better having purged the feelings and worry.  And I want to reassure women who have type 1 diabetes that a pregnancy is possible, and enjoyable, and like they all say – so, so worth it.

But, like I said, I’m starting to crack a bit.  On Tuesday, I’ll be at 30 weeks, seven and a half months pregnant with just under nine weeks left to go.  And these last few weeks have been … well, not exactly rainbows and unicorns.

  • Like last week, when a string of 200′s had me bump my basal so high, on the heels of amped up nerves, that I overdid it and ended up with two 50 mg/dl’s in the middle of the night.
  • Or on Monday, when a carefully measured breakfast and a carefully calculated bolus, delivered 45 minutes before the meal, sent my blood sugars rocketing up to 248 mg/dl and held there for two hours.  
  • Or the other day, when i realized that pregnancy is actually ten months long, not nine.  Damn lunar months, and why the hell didn’t someone give me a head’s up about that?
  • Or that yesterday, Joslin gave me the run down on the rest of my appointments that are scheduled.  There are 20 of them.  I don’t understand how people manage a high risk pregnancy and keep their jobs. 
  • Or that next week, I’m having the eye dilation that will determine BSparl’s method of arrival, and I’m really nervous about it.  I’m nervous about vaginal birth or c-section.  Doesn’t matter.  Just “giving birth” has my stomach twisty.
  • Or the fact that I’m craving carbs (nasty carbs, like cheeseburgers and chicken nuggets and pastries) and am having a very hard time not caving to these cravings.  I can’t have anything even close to a sleeve of Ritz crackers in the house or they will disappear within a day’s time.  I’m ravenous for these rotten carbs, and I’ve crocheted three scarves in efforts to curb the cravings.
  • Or that every time my numbers are out of range, I want to hold her little hands and tell her I’m sorry.
  • Or yesterday, when a perfect Dexcom flatline overnight was shaken by a cheese stick and a cup of decaf tea, leaving me with a blood sugar of 350 mg/dl and on the cusp of a panic attack.  What does this do to my baby?  Is she okay when I’m spending an hour over 300 mg/dl, without much food at all in my system?  Does she hurt when I am chugging water and stressing out but trying to control my emotions because I want her little womb to be serene and calm, not the spin cycle of diabetes chaos that I am so good at tossing her into lately?

Diabetics have healthy babies all the time.  I know this.  I’ve read this, others have proven this, and I hope to write those words myself in a few weeks.  But honestly, the mental part of pregnancy is more than I was prepared to deal with.  The guilt of every blood sugar and every miscalculation makes my heart ache, and I have found myself praying more in the last seven months than I ever have the thirty years before. 

I want to paint that “rainbows and unicorns” picture for you guys.  I want to make pregnancy seem like it’s the most beautiful thing on the planet and even a person with type 1 diabetes can see the nine (ten?!) months through safely.  But as my delivery date draws closer, I’m not sure.  And I’m scared.  And I feel stupid because I have zero control over my emotions these days, leaving plenty of tears in my wake. (I’ve become a mega-wuss.)

Ugh, downer of a post.  I really can’t wait to have the baby, but I know that part of why I want her out is because I believe she’ll be safer once she’s in the world and outside of me.  I know that Chris and I can take care of her, as parents, and keep her as safe as any other couple who loves their child.  It’s the whole “now” process that has me in knots, wondering if I’m taking good care of her now.  I want the absolute best for my daughter, and I feel so guilty because I know that my body creates a challenge in some ways.

Just a few more weeks.  Every test, every infusion set change, every moment of blood work, every doctor’s appointment, every time I pay the co-pay or the parking garage fee, every refilled prescription, every new CGM sensor, every curbed craving … everything.  Everything is worth it if I can get to the end of this and have her out, safely. 

And then she and I will get matching mommy and daughter tattoos – hers a rainbow, and mine a unicorn.

(Note to people who may think I’ve completely lost my mind:  Kidding about the tattoos.  But I might buy her a t-shirt.)

Avatar of Cara TerreriAbout Cara Terreri
Cara began working with Lamaze in 2004, two years before becoming a mother. Three kids later, she's a full-fledged healthy birth advocate and the Site Administrator for Giving Birth with Confidence. Most recently Cara began study to become a Lamaze Certified Childbirth Educator and DONA certified doula (learn more about her services at www.SimpleSupportBirth.com). She continues to stand in awe of the power and beauty in pregnancy and birth, and enjoys helping women discover their own power and joy in the journey to motherhood.

Comments

  1. janel says:

    I too am a type 1 diabetic pregnant now at 27 weeks with my third baby. I read your blog with great interest because, other than a friend who is also type 1 and has had two children, there are so few of us out there, and even fewer who will speak frankly about their experience.

    My first pregnancy was riddled with issues from uterine fibroids causing unbearable pain, cholestasis, insomnia, uterine irritability and, at the end, hyper tension. None of these issues were caused by my diabetes. My blood sugar control was VERY good despite the dire predictions of my perinatalogist but I too remember the guilt and desperation at every number that did not fall where it should! When the time came I had to FIGHT to have my daughter vaginally even though there was no indication that she or I had pressing issues. I knew that if I consented to the C-section I would never get to have a vaginal birth (my hospital does not allow VBAC). She was big but so had I been when I was born. My membranes ruptured on their own at 35 weeks 5 days. I was given cervadil after admission despite having started laboring on my own. After that it all went down hill. I was the first type 1 to have a baby at the hospital and many of the nursing staff didn’t know anything about my pump or how to handle my situation. My husband took charge of my diabetes management and kept a log of blood sugars etc. My OB encouraged the staff to let me handle it all on my own. I remember very little of the birth except for the four IV poles around my bed, my family’s smiling faces and the nurse literally squeezing a pitocin bag into my as I pushed . I did get my wish and my daughter was born vaginally after 17 hours of labor. There was tearing and I was so stoned out of my mind that I look like a zombie in most of the pictures but she was here and healthy. A few hours after birth her blood sugar plummeted to 16 and she was taken from me with very little explanation to the NICU where she join other “sick” babies. I was not encouraged to breastfeed, they started her on a bottle without permission and they kept her there with no set guidelines for her release. At one point a nurse told a dear friend she could not hold her because she was sick and needed to sleep. Being my first baby and that I was completely dazed I went along with it. Not so with baby number 2!

    I was determined to have a less medical experience the second time. I wept openly in my OB’s office describing how cheated I felt by my first birth experience. She supported me in my plans to try not to use induction drugs (IF I started on my own again) and she intervened in with the NICU so that they were prepared for the arrival of our second baby. Unfortunately, it was all for naught. My daughter went from being 5 pounds 3 ounces at a 32 week ultra sound to being 8 pounds at a 35 week ultra sound. I knew there was no way, with a week left before the scheduled induction. I made my peace with it and my OB said that considering her experience delivering my first baby she would not feel comfortable doing it again especially knowing that this baby was bigger. The c-section was scheduled and I went in 3 days prior for an amnio to check for lung maturity. While this pregnancy had been WAY easier (none of the other issues presented themselves the second time around and my BG numbers were even tighter) I did have low/ normal fluid levels from 30 weeks on. The doctors never felt is was dangerous and we basically proceeded as “planned”. During the amnio however, it was discovered that there was only 4cm of fluid left and I was scheduled for a c-section that night. I was at peace with the whole thing and honestly, didn’t feel cheated by the process until in recovery when I was told that the baby would have to go on an IV with a glucose drip and that I would not even get to try breastfeeding her first. Off she went and I got a brief glimpse from the window of the NICU as they wheeled me to my room. Next, I was informed that I could not even go see her for a minimum of 7 hours because of the hospital’s mandatory policy for surgery patients. After being disappointed and heart broken they awoke me every hour to monitor my blood sugars and take my vitals. When I finally fell asleep I missed the magic hour when I could have gone in to see her. It was 10 hours after birth before I got to really hold my baby. This time around we were more forceful with the NICU staff. We stressed that she was NOT sick like the other babies but merely needed the glucose til she leveled off. We also refused to let them bottle feed her and started pumping breast milk right away. This did not go over well nor did the constant stream of questions about when she could be released. Every shift change gave us a different set of criteria until finally we demanded that the pediatrician on call write up a specific order for weaning her off the IV and her release from the unit. 2 days later she was released to my room but had to endure a day of waiting to nurse at each feeding so nurses could check her blood sugar before meals. Agonizing watching someone prod your baby while she screams in hunger and distress and knowing that if they just let you do it all would be over quickly. We were released from the hospital after 4 days and recovery was easy. We struggled with jaundice and fatigue but after a shaky start managed to get into a routine at home.

    This pregnancy was not planned at all. I got lucky because my A1C was actually better than with my two planned pregnancies because I had been running on so tight of control (old habits are hard to break after all!). The diabetes control has not been as easy this time around and I have had a hard time with the emotions of that. Your experience reminds me of how I am feeling this time around. Now I am gearing up for the inevitable conversation with my OB. The hospital will not let me attempt a VBAC nor would I pass any assessment for being a viable candidate at another hospital because of my diabetes. I know I will have to have another c-section and I thought I was ok with that. Now I am not so sure. I am angry that my experience(s) can’t be what I want them to be (I am not even striving for normal or natural at all!) I am upset that I will have to endure all the medical craziness again despite the fact that my infant and I are NOT ill. I feel some relief that we are going into this armed with knowledge and experience and will know what to do and say but I am sad that I will never have the experience of walking through my contractions or having my husband rub my back as I breath through the pain. I am sad that I will never have my baby, just seconds old, laid across my chest or have my family all there with me as they were with my first. I am frustrated that I can’t make this birth be more friendly towards my needs. I am scared as to what will happen this time around.

    I guess I am tell you all this because I am interested in what kinds of advocacy there is for moms like us out there. Who is sticking up for the high risk moms? Who is pushing for us to be treated more like individual women having babies rather than just statistics? Why can’t we experience as close to the natural process of birth as possible? I find that care of diabetic mothers varies so much within the field of perinatalogy that my course of management is vastly different from that of others. Hospitals are creating policy on how to deal with us as we are being wheeled into the OR and the staff is exceedingly untrained about our specific needs. I’d be interested to hear what you think and what your ultimate experience was.

  2. Kma says:

    I just stumbled upon this post and oh my gosh its wonderful to hear another pregnant diabetics feelings/worries! Ive had type 1 diabetes for 15the years. I’m currently 24 weeks and have had a rollercoaster ride the whole time! Its good to hear someone else has the exact same issues as me! Hopefully the next several weeks will go smoothly and FAST!

  3. melissa says:

    hello i am just want to no if u can have kids with disabilities type 1 i have i want to have a kid bit the docthers say no for now i am 28 and my boyfrined wants kids to i have one gril here and she good i have disabilites 7 mounths a go here finding things hard to get my head arond here with thing

  4. Janis Jarmon says:

    Iam very happy that I found this side,it give’s me more hope that everything will turn out well with my unborn baby.First a little about me Iam 34 years old and a type 1 diabetic for 24 years I have 3 healthy children they are 14,13 and 12 I have had minor complication with my 13year old.So many years have past I have not taking care of my diabetes well.Three years ago I was pregnant and under so much stress,high blood pressure,thyroid disease,my A1c was 11.4. Wen I was 11 weeks pregnant I was admitted in the hospital, my sugar ran 400mg,30mg I past out three times in the hospital in front of the nurses,I cry’ed almost every day,the doc talked to me after 3 weeks and told me that they have to let me go home,they told me it was to early to see what complication the baby have,and that this pregnancy is a very high risk for my baby and also me he told me I have to see until I be about 24 weeks pregnant and be admitted to the hospital again until the end of pregnancy!!!!! That night I fell on my knee’s and prayed to God I ask him to forgive for not taking care of me and my unborn baby!!!!!I was selfish and ask God that His Word will be done!!!!If my baby have to go thrue pain and disabilities to take it from me,and let it rest in his arms.The next day the nurse made a last ultrasound and could not find a heart beat, they had 3 nurses and 1 doc to confirm that my unborn baby was not alive.I was destroyed,hurt. I felt very guilty. Wen they removed me baby it left a whole in my heart.I started to take better care of my diabetes and the healing process really took year I was not even able to look at a pregnant women.I have learnt not to take live for granted!!!I am know 34 and 14 weeks pregnant I am really trying not to stress out,but every doc visit or a sugar level is out of range,give me concern. I pray to God to let this baby be healthy and give me the strength to do right by my baby and let my sugar levels be on target its a challenge I do have the support From my husband and my children, but most of all I have the support from God and the power in my self to have a healthy strong beautyful baby.

  5. heather says:

    I’m a type 1, 22 weeks pregnant. While it was reassuring to read that others have the same worries but are still trying, I am horribly offended by the title “Pregnant with Disabilities.” Diabetes is not a disability, it is a disease.

  6. Avatar of Cara Terreri Cara Terreri says:

    Heather,

    Thank you for commenting and let me first say that I am sorry we offended you. You are right to say that diabetes is a disease. Some people feel that a disease is debilitating and therefore use the terms disease and disability interchangeably. Clearly for you, this is not the case. How we word things is so important — if we call a disease a disability, then we may focus on an inability to cope and live life. Thank you for your insight and providing a thoughtful reminder on semantics.

  7. Sarah says:

    I’m so happy to have read what you have experienced. I have had type 1 for 11 years since I was 14. I am currently 23 weeks pregnant. My sugar has always been under good control , but sometimes it seems the insulin doesn’t kick in or it leaked out. For example i checked my sugar it was 120 then gave myself a bolus and ate a cookie from subway , went to workout and when I checked afterwards my sugar was 350. I feel sooooo guilty and as you said want to hold his hand and apologize. I am wracked with guilt. Thanks for having somewhere to speak to fellow type 1s. I have only ever met one other type 1 mom. It feels pretty lonely . So I really appreciate this site! Sarah and (baby Orion )

  8. taylor says:

    I agree with Heather. Type 1 is not a disability, death sentence, deformity, etc. It is a disease that we live with and manage as best we can. Diabetics already have enough ignorance and stereotypes to battle on a daily basis. Please reconsider the terminology you deem “interchangeable.”

  9. Emily Reaney says:

    One of the first thing myself and my family reassured me of was that it was no-ones fault that I had gotten diabetes. I was 12 when I was diagnosed, I’m 17 now and have had trouble controlling it for about 3 – 4 years. When I read this, all I thought was, ‘don’t blame yourself’, it’s just something that some people get, and, in many ways, those with diabetes are stronger. I think it’s awful to see someone blaming themselves or others for their diabetes as it is awful enough to live with, no one with the condition deserves blame as well. I give you my best wishes for you and your daughter and hope the birth goes well =) Even though I have not given birth myself, I know I definatly want to someday. When your blood sugar is high, try to just think, okay I’ll sort this out, When I was diagnosed, I was at the worse stage for hormones, it was very difficult, but you eventually get it sorted out, what matters is that you try whenever your bloods go out of control. I hope it all goes well and I’m sure you’ll have a beautiful and healthy daughter =) xx

  10. Marie Fox Johnson says:

    Hello everyone. This is my first time being able to comment on other people’s post. I’ve been type 1 diabetic since I was 8 turning 9. I’m now 23 and as of now I’m 21.5weeks pregnant. Within the first trimester my bs were better then anytime throughout my life. It was the first time my A1c dropped to a 7.5. Throughout my hole life my A1c has been 16 and no lower than a 10. So I was extremely scared when I found out I was pregnant with my husband. 1st tri went by smoothly with pains here and there, but as the 2nd tri hit, I was and am still constantly getting sick. I have highs still yet my lows are just as commen. All I do is try to eat as healthy as possible and pray. Since big babies run in my family yet type1 diabetes don’t, this scares me so much more. I’ve only herd good things about y baby girl and my next ultrasound is a week 24- where they will examine the heart a little closely. I just pray they keep telling me that she’s healthy. I really want a vaginal birth and I’m still just scared about everything. I have to drive two hours away for my appointments because I’m high risk. I hate it, but I’m glad these doctors are showing improvement with my bs. My husband is in the army and we are here in Missouri for another month, I can’t wait to go back home to be with family. I have a huge life story as I know all of you do too, so I’m trying to keep it short. When I was younger I was put in to foster care due to my bs being so high, yet they remained there. At the time the docs felt I was getting more than enough insulin for how thin I was so they were scared to raise it. Once a year passed and I came out of foster care I went to another doc and it just seemed my bs would never stay normal. This pregnancy has made me feel so happy because I feel like the baby helped me in some way. As the weeks go by my blood sugars keep changing and I do get scared. I too feel horrible and helpless when I have thoses high sugars. But I just keep doing what I know it best and keep praying that my baby will be healthy. Does anyone know how many people are allowed in the room while given birth since we are high risked? I guess ill find out when I move back home but I was curious.

  11. Bronwyn says:

    I found this post tonight and am glad to hear experiences of other type 1 diabetics. I have two little girls and desperately want a third, but for now my husband has said no – his reasons are that the last pregnancy was dangerous and we cannot put the family at risk. I am working to get an insulin pump in the hope that this would make a third pregnancy easier to handle and prevent the severe hypoglycaemic episodes that landed me in the ER a few times and had my toddler wandering the house unattended while I was comatose.

    My first child was born naturally after an induction at 38 weeks – she landed up in the NICU for a day and also had to stay in the hospital an extra day because of jaundice – which was not resolved actually when she left and with the help of a lactation consultant I got her under lights at home by myself where she recovered as I could not bear to have her back in hospital in the pediatric ward at that point.

    My second child weighed only 8 grams more than my first – I had to fight really hard to be allowed an induction despite the fact that I had successfully birthed my first child. This birth resulted in a C-section as her heart rate was diving with every contraction towards the end of the labour – even the anaethetist asked the gynae if I couldn’t manage to birth the baby naturally since I was already so far dilated – and I suspect with midwife care we probably could have made a plan to succeed. I will not regret agreeing to the C-section as I needed to do what I knew would result in a healthy baby, but it was much much harder than a natural birth and I know that any further baby I have will have to be a planned C-section now.

    For those of you pregnant now, while both births and early days with my babies were slightly traumatic for various reasons (having a baby in NICU is hard no matter what the reason) both my daughters are perfectly healthy now and I love them to bits – it was worth all the struggle of those pregnancies and now when I want a third I know that when that life is there it will all be worth it – the difference this time is that I have to consider what is best for the two I have now and also whether my husband can handle another pregnancy as he really had to support me more than most men need to help their wives during that second pregnancy. However, I have decided that a third to me is so worth it that I am going to every effort to prevent the problems of last pregnancy by sorting things out before even trying to get pregnant – I know I cannot do this on multiple injections again – it must be a pump.

  12. I love this post. I feel the exact same way. The past 9 1/2 months have been full of prayers and feelings of total guilt. Trying to grow your child inside of you and maintain your blood sugar levels to provide her the healthiest home is a mentally exhausting and overall challenging adventure. It doesn’t help that your health insurance company won’t let you check your blood sugar levels as often as you know you need to because they don’t want to fork out the dough (don’t even get me started on how horrible our bureaucratic health care system can be). It has been 9 1/2 months of fighting with my health insurance company and fighting with my blood sugar levels. All the while, I have been combating these frustrations with as many natural stress relieving techniques as possible. You other diabetics out there know how much stress can increase blood sugar levels. So far, I have had a healthy high risk pregnancy (knocking on wood) and no matter how hard I have to work to keep it that way, it will not deter me from enjoying this miracle and continue with my aspiration to have another child. Thank you Cara for posting this. It is very reassuring to hear that you have had similar experiences with blood sugar maintenance and intense carbohydrate cravings. My insulin requirements (basal and bolus) have increased so much, I feel my pump is going to blow up. :)

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