Pregnancy and Repeat Diagnosis
Editor’s Note: Megan was a member of Beyond Type Run‘s 2018 TCS New York City Marathon Team sponsored by Dexcom and Insulet, makers of the tubeless Omnipod Insulin Management System. Learn more about the 2019 Beyond Type Run team here.
When my husband and I found out I was pregnant, we were ecstatic. We felt like we were the luckiest people alive and I was determined to have the best, most tightly controlled type 1 diabetes (T1D) pregnancy possible. I got a continuous glucose monitor (CGM), tested like crazy, ate right and maintained A1Cs in the 5s and 6s for all of my pregnancies. I worked with my endo every week to change settings on my pump, and I saw him once a month. Pregnancy showed me that I really could achieve the control that I had always thought just wasn’t possible. If I focused and worked hard, most of the numbers reflected that and most of the time, all was well. It was really surprising and a great learning experience for me.
When my first son was born, I quickly realized that tight control with a newborn was a whole new challenge. His needs were more urgent and so much louder! Ensuring that he didn’t get any formula was really important to me too. (I remember reading research that said breastfeeding could be linked to a lower likelihood of T1D, so I was all for it!) All of that laser focus on baby care meant my diabetes care definitely fell to the back burner. But, I always maintained decent A1cs, did not have any serious hypo/hyper incidents, and for the most part, was doing pretty well.
Then 13 months later, we found out we were pregnant with identical twin boys. Again, we were overjoyed, terrified and honestly incredibly shocked. It also placed a huge stress on me to replicate what I had for my previous pregnancy but now with a twin pregnancy!! I went back on the CGM (I had gotten rid of it right after delivery because I felt like it wasn’t very accurate, was painful and didn’t last very long), tested often, and had great control again throughout the pregnancy. The twins were born healthy and all was going great. Then, just one day shy of their first birthday, I noticed that one of the twins’ diapers was incredibly heavy. That was the only indication that there was something not right.
I never expected my kids to get T1D. Ever. And if they were to get it, I thought it would be closer to their teens, like when I was diagnosed. I remember thinking that I was just going to test him really quickly, so I could just forget about the worry and move onto taking care of my three toddlers. When the number came up 568, I was inconsolable. It was beyond the most heartbreaking day of my life. I’ve never felt so frantic, scared, or sad as I did in that split second. I tested his other hand. I tested both of his feet. I called my husband and then the boys’ pediatrician and they couldn’t understand what I was saying because I was crying so hard.
I knew what he was in for. I knew what was coming. I knew all the millions of ways this day would forever change the rest of his life. We spent four days in the hospital (thankfully his A1c was 6.1 so it was very early. We were there mostly to get setup on the pump and figure out the tiny doses of insulin a 12-month-old would need). I had tested my other twin in the midst of the chaos of going to the hospital and his test came up 138. It was not a comforting number to me. I felt like this showed he was going to have T1D too. But, when I talked to the doctors about it, there was nothing they could do.
They tested him and he came up at 90. They tested his A1c and it was normal. We were going to keep a close eye on him and see. Less than three months later, we repeated the same hospital stay, pump setup, etc., with my second twin. I had kept a close eye on him since his brother’s diagnosis and was testing him regularly so again, we were able to catch it before he showed any real signs of not feeling well. This diagnosis was a very sad day for me but, admittedly, less sad. I had mentally prepared myself and found some gratitude that they would have each other in this.
Then my husband and I had an even bigger decision to make and for really the first time T1D really became a huge factor in it. We had wanted four kids, but I was now faced with the reality that our next baby could also have T1D. It was more real to me this time and we had to decide if we wanted to subject our child to it. So many thoughts ran through my mind every time we discussed it. I’ve lived with T1D since I was 11 years old. If my mom, who also has T1D, decided she didn’t want to risk having a child with T1D and didn’t conceive me, then what a life I would have missed out on!
It’s a beautiful life and why should I take that away from a child because they may or may not get T1D? Everyone has a struggle in life, and this is mine. I love being a mom with everything in me. It is the most challenging, rewarding, heartwarming, magical, (albeit disgusting and exhausting!) time of my life. I would have missed out on so much in choosing not to have my babies. And they would have missed out too. I’m a really good mom (at least I really try to be) and I get to try my hardest every day with my boys. Diabetes doesn’t change that. It’s still something I think about, I feel guilt about, but I do feel that it is worth it. So, after almost two years of hemming and hawing, we decided to try for #4.
This pregnancy was significantly harder with having three boys, (four years and under) and with my health, (my A1c was much more of a struggle). But by this time, I had switched to the Dex and was in love with it and was grateful for all the tools I could get. My fourth son was born bigger than any of my other sons, but is perfectly healthy and so full of joy!
I also had pre-eclampsia in all three of my pregnancies, which I was told is more common in T1D moms. All four of my boys had short NICU stays to learn how to eat. This is a common issue in babies with T1D moms. Thankfully, the short NICU stays allowed me to get the time and one on one attention from the nurses on learning how to breastfeed/increase my supply with a pump/setting the babies up on more of a schedule, etc. I do feel gratitude for that, as I was able to successfully breastfeed all of four of my boys for their first 12 months, with no formula supplementation. I have not had any complications or adverse health issues from my pregnancies.
This is Megan’s first story about type 1 pregnancies and raising type 1 children. Read her next story Caring for 2 T1D Boys.
To learn more about the 2019 TCS New York City Marathon Beyond Type Run team click here.