Things Needs to Change for all young Women with T1D: The Purple Hippo in the Room

May 30, 2014By 3 Comments

hippoRecently, I had the privilege of participating in a patient panel for the T1D Exchange.  The panel consisted of a total of 5 individuals living with T1D at different stages in their lives.  I represented the young women, and new mother, living with T1D.  I had the pleasure of sharing my story, which included my major triumphs and rock bottom lows (no pun intended) that have bombarded my everyday life with T1D.  The audience that we spoke in front of consisted of elite medical professionals, executives from device, pharmaceutical and biotech companies that were all there to learn and gain a better understanding of the research and potential life-saving products and care that are needed in order to provide the best tools for a T1D.

Some of the more important points that I was aiming to get across to this large group of influential people in the diabetes community, was to share my thoughts, suggestions, and comments on what is going on today, or lack thereof, for support for an adult women living with T1D.

Assumptions among medical professionals:

There is a fine line between giving patients the freedom to take charge of their diabetes by learning how to adjust their own basal rates for example, and then treating a long time T1D with little respect which they certainly deserve and who could probably teach the medical professionals a thing or two about managing blood sugars.  In particular, I spoke very strongly about the lack of support for women with T1D who are looking to have a baby.  There is usually only one thing that happens when a young T1D women tells their OB or Endo they want to get pregnant…they get the complete fear of God put into them about all the devastating things that can potentially happen.  This needs to STOP or at least be rephrased and consistently executed in a fashion that is honest but sensitive to the already freaked out woman.  It is understood that there are many reasons why a women with T1D is at high-risk for all sorts of complications to both herself and her baby, but there needs to be better support and education around how to prevent those things from happening and how to emotionally deal with them if they do.  This needs to begin with the Endo’s, high-risk OB, and pregnancy programs in the diabetes clinics around the nation.  We need to do a much better job at this, and we still have quite a ways to go. This needs to change.

Pregnancy and Breastfeeding Research and Support:

I presented at the JDRF T1D Nation Symposium in Boston back in March on ‘Pregnancy, Breastfeeding and Nutrition with T1D’.  As part of my presentation, I wanted to share with the audience of young adult women with T1D the statistics about complications in pregnancy and outcomes.  Unfortunately, all I could find when I searched online was one study published back in 2004 in the British Journal of Medicine, done in the Netherlands and included 321 T1D pregnancies.  It looked at outcomes such as macrosomia (large baby), pre-eclampsia, pre-term delivery and many other events.  While this is great and useful information as it related to A1c control in the study participants, this is over 10 years old!  So much has changed in regards to methods of how we control our diabetes, education for pregnancy planning and overall improved outcomes of the health of the mother and the baby.  I shared at the meeting that there needs to be more up-to-date studies with T1D women, and to follow them from at least a year prior to conceiving and at least one year post-partum.  This is vital for us to be able to better understand what tools and technology we need to allow for a T1D mom to have a successful pregnancy without literally going insane.

The extreme OCD and near-non diabetic blood sugars and perfection that is needed for these healthy outcomes is what I fully believe led me to go off the deep end after the birth of my baby girl.  I had spent over a year up to conceiving and the entire 9 months during my pregnancy wearing my CGMS and beating myself up every time my BG went over 130!  Keeping my A1c at 5.4 the entire time did indeed give me fantastic outcomes and a beautiful healthy baby girl, but this left me feeling extremely burnt out after my baby was born. Then to top it off, I was extremely determined and stubborn to exclusively breastfeed (this means NO formula and limited pumping) for at least 6 months.  I did this with erratic blood sugars, mastitis, thrush and a whole host of other painful and exhausting scenarios because I wanted to reduce the risk of my child getting type 1 someday (there is some data that shows nursing exclusively can reduce the risk of T1D by about 37%… along with other autoimmune conditions).  Yet again, I found NO data, research, resources or support for breastfeeding moms with T1D.  Nothing on how to handle blood sugar control during the babies growth spurts which would leave me with rapidly plummeting blood sugars out of nowhere, only to find that the next day they would sky rocket into the 400’s once the growth spurt was over and my milk production slowed down.  I had no medical advice anywhere to be found and nothing in any literature to prepare me for this.  This needs to change.

Post-Partum Depression Support and risks related to living with a Chronic Disease:  I could write a book about this; but in a nut shell, having a chronic disease does put one at a higher risk for post-partum depression, among many other risk factors that don’t always apply to everyone with T1D.  If you stop and think about what I mentioned in the above paragraph, needing to be in complete obsessive control of the outcome of my health and my babies health every second of every day for nine months, left me feeling completely helpless and on the verge of mental collapse holding a screaming, colicky, barely latching newborn and a mess of blood sugars to contend with. Baby blues occur within the first few weeks after birth due to hormone fluctuations, post-partum mood disorder (OCD, anxiety and coinciding depression) can occur months later.  That is what happened to me, about four months later.  There was nothing, no one I could talk to, or at least no physician (my PCP or my Endo) asking me those all important post-partum questions about how I was ‘feeling’ and ‘coping’ and better yet, how I was dealing with my crazy blood sugars, lack of attention to my diabetes, breastfeeding pain and oh, how that may be effecting my overall mental health.  This needs to change.

Overall, I know things are changing.  Thanks to Glu and T1D Exchange more now than ever we are having lines of participants offering information, constructive feedback and answers on how we can improve the medical care and emotional support for those of us struggling on different levels with this disease.  I am just one voice, of a young women with T1D who is now trying to manage being a mother of a rambunctious toddler and a very insulin resistant period in my attempt to get back to being the stellar diabetic that I once was when all I had to worry about was my diabetes.  Unfortunately, it’s not always top of mind these days among keeping track of my daughter’s precious purple hippo which is vital to her happiness and making sure there is milk in the fridge for her.  I have to keep reminding myself that I need to treat my diabetes like my purple hippo and take it with me wherever I go, and to take good care of it as if my complete happiness depends on its safety.

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Comments (3)

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  1. Corinne M. says:

    Excellent post! These issues need to be addressed.

  2. Jennifer says:

    This is so well written! Thank you, thank you, thank you for speaking to this group so eloquently!! I receive a lot of encouragement from my endo (and my OB when I was pregnant) but I still feel like I am automatically grouped together with those T1Ds who don’t take as good of care of themselves as I try to do. Definitely experienced all those “worse case scenario” discussions about what my pregnancy outcomes could be…There are a lot of things that need to change and I appreciate your focus on young women, especially mothers of littles.

  3. Elizabeth Shapiro says:

    Regina – Well-written as always. With your recent speaking engagements at fundraisers, etc., I wonder if or hope there is additional opportunity for you to continue to influence medical and research professionals about these much-needed studies. Schocking that so little information was available to you and impressive how well you succeeded in spite of it all!

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