Editor’s Note: Pregnancy is never an easy journey. Coupled with Type 1 diabetes it adds an entire new layer of worry, diligence and determination. Although my story below is rare and hopefully not a reality for any of you, I hope you’ll consider sharing your own story to help us help others. If you are pregnant and have Type 1, take this survey on Glu and help field research for future generations of mothers.
On Thursday, March 3, 2016 I glanced at my CGM graph, shoved it in my bag and ran out the door to a dentist appointment. I had just finished my latest Glu article, and after several back and forth edits, I was ready to announce my pregnancy. For whatever reason, I had been hesitant to share anything on social media, and insisted on waiting until after our anatomy appointment, thinking it would be a big milestone. It was. And now, I’m sharing with you a different story …
My blood sugars were high the week leading up to my travels — “wining and dining” with diabetes friends (new and old) and networking up a storm only caused more stress on my pancreas and I thought, despite my hopes, nothing could happen during this international 3-week work trip in my reproductive world … wrong.
Blood sugars had been easily floating in the 200s “yellow graph range” on the Dexcom for days on end, and airport and hotel food for the next two weeks was not going to contribute to consistent in-range dots.
“I can do this,” I said to myself.
Fast forward three months — I am now 18 weeks along. I had visited my endocrinologist, nurse educator, high risk OB, and ophthalmologist totaling nine appointments — all to ensure the little kiddo was alive and well, and my blood sugar levels controlled. A1c was well under 6, eyeballs clear as can be, and zero signs of anything happening with the kidneys. Sweet! It was all too insanely good to be true, and all of my hard work preparing for pregnancy had paid off. Then came the “anatomy scan.”
The ultrasound tech, whom I’d gotten to know well at this point, said everything pretty much looks great. “We might just want to move up the fetal echo to get a better look at the heart.”
Oh okay, I thought to myself. I knew they did this extra ultrasound at around 22 weeks for Type 1s. I guess it can’t hurt to have it done sooner, one more appointment to cross off the list!
Then the doctor came in. She came over to the side of the bed and sweetly said, “Things look good, except the heart doesn’t look normal to me. I’m already having the nurse call up to Children’s to see if they can get you in today or first thing next week.”
Still in utter shock, Andy and I grabbed our coats and made our way from one parking garage to the next. Little did I know “please take your ticket” would become such a common phrase I’d hear over the next two weeks.
Thirty minutes later we arrived at Boston Children’s Hospital. We completed the usual “my first time here” paperwork, waited to be called in to the room where someone did the ultrasound, and then we waited … Getting your nails done without much conversation is fine, but this lady said nothing. I immediately felt this sense of loss of control. My future was out of my control.
The wait with the flashing blue and red lights, and movement of the “wand” around my tummy always reminded me of waiting for a blood sugar — the “did I do enough to assume the number will be where I want it to be, or in this case, is this child, alive and moving around?”
“I’m going to give you the five-minute low down now, but I’d like to sit and talk with you about this for about an hour … as it is a pretty significant heart disease.” I look at my hubby and try with all my limbs and brain cells not to shed a tear, still lying there with, for the second time today, loads of ultrasound gel on my barely showing belly.
Close to two hours later, I was still numb. For the first time in my life, I felt like a parent, 18.4 weeks pregnant. We learned our baby had Hypoplastic Left Heart Syndrome, meaning it was missing an entire left ventricle — one of the much needed chambers of the organ. A nurse came in to take notes and validate funky medical terms and unknown phrases. The doc then stated that in order to treat this condition, a series of three major open-heart surgeries would be needed before the age of three to allow the right ventricle to compensate for the lack of the left one. Our baby would have a 65ish% chance of making it through those three surgeries, and likely suffer developmental delays, physical complications, and the inevitable, needing a heart transplant at some point throughout his or her life, most likely as a teen.
We tried to keep it together, staring at a white board of heart anatomy gibberish, processing what our weekend would be mentally and thinking of every possible question we could ask. We had a big decision ahead of us. Do we push through and risk my already high-risk pregnancy to have this baby and love it unconditionally, despite the obvious challenges? Or do we say goodbye peacefully and end the pregnancy?
Somehow, in some weird way, I could relate to a parent of a newly diagnosed child with diabetes. The diseases are vastly different, with discussion of survival rate piled on top of complications, but ever so similarly, I sat in a room with a doctor and a nurse educator, grasping the new hat I was wearing — a heart mom, like a D-Mom. After 27 years as the patient, I was now the parent. I can relate to you diabetes parents now.
I couldn’t fathom attending another appointment but the cardiologist recommend we come back for a further ultrasound. I could barely eat all week, my blood sugars became nearly the last priority on my mind, as I ignored all beeping highs and lows and procrastinated any infusion set changes. I was physically weak and mentally exhausted, completely out of control and still trying to comprehend what was actually happening.
At this visit, the same heart anatomy showed up on the board, but this time our cardiologist moved our “standard risk” down to a 30ish percent chance of survival (he requested we come back for a second ultrasound).
“There is a pretty restricted atrial septum with fluid back up on the lungs. This would also increase the hospital stay for the baby to six months, making breast-feeding and daycare out of the question.” Stop talking, I thought to myself. I can’t do this. I could tell the doctor didn’t want to have to deliver any further news, but appreciated his honesty and thorough explanation of all aspects of this illness.
Walking to the elevator with heavy tears, I think not even saying anything, my husband and I looked at each other, and just knew. We knew in our hearts that this little heart would be suffering, and it was too cruel to keep pushing them forward into a world of tubes and wires, with a slim to no chance of making it to adulthood.
That was our sign we needed. That was the information that told us, in our gut, the best thing we could do for this child was to eliminate any pain or suffering, and let us do all of that on his or her behalf.
We cried tears of sadness and heartbreak, not for us, but for our little babe. Both options sucked. We knew that. Nothing made sense. Nothing about my mind, or body made sense at this point. Nothing. Unlike every blood sugar I worked so hard for, lost sleep over, for this, this, was out of my control, and there was nothing I could do to get it back.
Even a year after the procedure, I’m still circulating in my mind and body everything I’ve endured, and the one thing that never leaves this entire mental process is control. For months, and years really, I’ve prepared my body to carry a child — diligently pricking my finger, adjusting basal rates from .6 to .65 for example, just giving myself the slightest increase in insulin to ensure the optimal A1c was achieved, and I was in full control of my diabetes.
Pregnancy is completely out of our control. Of course I did not smoke, or drink, or consume the list of foods recommended to avoid, but I am so accustomed to trouble-shooting in my head, over and over again, looking at graphs of a CGM, attempting to give me a glimpse of an explanation as to why a blood sugar ever so slightly shifted, and how I, me, and my brain, could fix it.
A heart defect I couldn’t fix. There was nothing I could have done differently. I had to let go of that. Diagnosed at age 6, knowing nothing but controlling my every bite and step I take was my “prescription for a healthy future,” I realized this journey was out of my control. All pregnancies are — the body is both a fabulously awesome and strange thing.
The outpouring of love and faith from close friends with Type 1 who have struggled to build a family is amazing. The unspoken understanding of chasing highs and lows accompanied by the guilt-stricken sound of beeps is comforting. I hate that it’s comforting for what it is, but it’s there.
We do the best we can to play the role of both a brain and a pancreas. We do a heck of a good job at that. So as you yell and scream and get frustrated with double arrows up or down, or realize you forgot to correct a high blood sugar, or possibly over-treated a low at 4 a.m., remember some things, are out of our control, and we do what we can with the tools and information we have to make the best decisions for our bodies. We really do.
Because of the need for further conversation and patient understanding around this topic, we decided to partner with Jessica Lynn CNM, CDE who is a nurse midwife and perinatal diabetes educator in NYC. Jessica also has Type 1 and two young children. Her experience, married with my personal and Glu community insights, has driven The T1D Exchange to embrace this as a research priority. Please take this important survey and share your T1D pregnancy experiences with us.
We want to learn more about pregnancy preparation, preeclampsia, birth and breastfeeding with Type 1. We are also looking at device use and its impact on outcomes. We’ll use the results to help educate women and their healthcare providers. Many thanks and all the best in your Type 1 motherhood adventure.
This story was original published on Glu.