Monday, August 15, 2011

Lessons from the NICU: Getting over the Type 1 diabetic guilt, anger, and other related feelings

It’s time to address the elephant in the room. Is my newborn son Ethan in the NICU (it’s been almost 14 weeks now) because I have Type 1 diabetes? Which I’ve had for over 36 years, very well controlled now but not always so. And I was pregnant with twins; Aria is his sister. And I had them at an “advanced maternal age” as those high risk doctors call it.

If you ask me, the answer is partially yes, but no one will say that definitively. The reason that Ethan is in the NICU is because he was born very, very, very small, and is working on recuperating from things associated with that. He stopped growing at 26 weeks in utero because of negative diastolic flow – which means that the blood and nutrients were flowing out of his placenta rather than into it.

Why did this happen? No one can say for sure. I asked one high risk doctor, and he said: It could be diabetes, but there could be other reasons as well. “We don’t know.” Another high risk doctor told me that it is most likely due to the diabetes and the fact that I was pregnant with twins. It’s quite a lot for a Type 1 diabetic body – who has had the disease for quite some time - to handle, she said.

To be honest, the diabetes theory makes the most sense to me and is the prevailing one in my book.

So that leads us to the emotional side of diabetes and pregnancy: The guilt. The anger. The feeling that life just isn’t fair sometimes. The feeling of responsibility for putting him in the situation he is now. Starting his life out in a hospital with beeping monitors, pricks and prods, tests galore, strangers feeding you in shifts every 12 hours, the whole shebang. He’s just a baby. The nurses try to make it comforting, like home. They hold him, talk to him, and let him play. But still, it’s a hospital. Away from the home he still hasn’t gotten to know and love. Or the family he sees a few hours a week.

This is not what I dreamed of or hoped for. I dreamed of bonding, walks in the park, cute little outfits, and lots of cuddling time. I’ve had all of those things with Aria, and barely with Ethan - only with nurses, doctors, and monitors in the same room.

How do I let go of that? How do I become at peace with what has happened?

Fred Luskin, author of Forgive for Good and cofounder and director of the Stanford Forgiveness Project, says that mindfulness and focusing on gratitude and kindness are the antidote, as told in Letting Go found in the May 2011 issue of Oprah Magazine. Luskin says that these concepts apply to any disappointment or hurt that any of us has experienced. It does not have to be as traumatic as a newborn child in the NICU. It could be as simple as someone taking your spot in a crowded parking lot.

I did my best to make my pregnancy a healthy one. And it was. My A1C’s varied between 5.8 and 6.1. I exercised as doctors prescribed. I gained a healthy amount of weight. I monitored my sugars and calculated carbohydrates. I visited doctors and listened to what they said. I came out of this pregnancy healthy. Aria came out of this pregnancy healthy as well. We’re thriving.

And Ethan – who was predicted to not even make it – came out of it with some feeding issues, a little small, and a few other things which he has already outgrown. He’ll outgrow the feeding issues as well, and of course, he’ll outgrow being small.

I willingly chose to have children, to get pregnant, despite the diabetes and my age, fully knowing all the risks involved. It’s a decision I made that I do not – and never will – regret. I have two beautiful children, and I love being a mom. I cannot feel guilty for that. And I don’t. Just the opposite: I’m grateful.


  1. You are an amazing mom and person! Thinking of you and praying for Ethan's discharge from the hospital soon! Hugs and kisses - Nicole

  2. I understand exactly what you are saying. My boy was born early due to severe PE. Lucky for me he was a good size 34 weeker and only had to spend about 2.5 weeks in the NICU due to feeding issues. Even during my pregnancy I use to feel the guilt - any number slightly out of range would send me on a "trip". In the end everything worked out so great for us. I now have a healthy toddler who will turn 2 soon. I cannot begin to imagine how difficult it must be after 13 weeks, and having twins to boot. thinking of you and wishing Ethan a speedy exit from the NICU.