I have had type 1 diabetes since I was three months old– or at least that’s what the doctors thought. I grew up with having an insulin pump and all the fun that comes with type 1 diabetes.

As a result of having type 1 diabetes, the doctors kept telling me that I could not have kids, that it was too risky. On Feb. 26, 2011, I married my best friend, who thankfully understood that kids were out of the question. So we went on living our married life until June 27, 2011, when we found out we were expecting. We were both nervous and scared, but the new diabetes doctor had confidence that everything would be ok. I wanted to be the best pregnant diabetic patient she had ever worked with because she had such confidence in me.

I checked my sugar no less than 15 times a day, followed everything she said to do, but my pregnancy was not going as a normal diabetics pregnancy would go. I remember the doctor saying you are not a normal pregnancy, which I kind of shrugged off because I have never done anything normal. Well the big day had come, and I had to be induced for the next day I had a C-section.

I had a beautiful healthy baby girl we named Arianna Marie Henry weighing in at 6lbs. 5oz. All the doctors and nurses were bragging about how low her birth weight was for a diabetic mother. I was happy because that meant I did everything right to get her here healthy….or at least that’s what we thought until my worst nightmare came true. My daughter’s blood sugar started to rise through her first day of life she went from 80 to 101. Then the next day, the doctor came in and said depending on what her blood sugar is, we will know if she is a diabetic. I will never forget the worried look on the nurse’s face when she said 256.

I started screaming, “I did everything right— How?” The poor doctor had to walk out of the room. My mother said she had tears in her eyes.

They sent us to Dr. K, who said that my daughter and I did not have type 1 diabetes. In disbelief, I said that I had had diabetes for 23 years. She began to explain that our pancreas can make insulin, it just doesn’t know how. We have a mutated single gene. Dr. K then sent genetic testing package off to the University of Chicago to find out which gene had been mutated.

Also she began to tell us that a single pill can control this type of diabetes. I felt joy in my heart that I would not have to give my newborn daughter insulin shots. The medicine that she started her on was Glyburide. This medication proved to work, so Dr. K got a hold of my doctor and had her start me on the medication as well. The doctor was not sure if it would work because my pancreas had not worked in 23 years.

Two years later, and I am insulin free!

The doctor at the University called to talk to me. He told me that we are two in 80 cases in the U.S with this type of diabetes and two in 400 in the world. He also told us we were one in four cases that this type of diabetes had been passed down from parent to child. I will be forever thankful to Dr. K and my doctor for helping us get to the point we are at now with our diabetes. The signs of this type of diabetes are very easy but can be thought as type 1.

Signs:

1. Low birth weight
2. Diagnosed with diabetes before turning six months old
3. High blood sugar levels

Everyone is still learning about this type of diabetes– even doctors! I love walking into a new diabetes facility, and they ask us type 1 or type 2. They always give us a puzzled look when we tell them. I wanted to share our story in the hopes that it will help another family. My daughter is my biggest miracle: she saved my life!

4 thoughts on “My Baby Saved us Both- Misdiagnosed with Type1 Diabetes”

  1. Daniel says:

    Soooooooo……… what was the diagnosis? Was it MODY 3? Or something else? This is like saying, “Wow, I started this new treatment for cancer that is 100% effective, with no sideffects. You should all start this treatment as soon as you can. People ask me what treatment I take, and when I tell them, their like “whaaaaaat”, you should totaly try it.

  2. Sandra Guzman says:

    How can I get this doctors information? If you could please email me I would love to contact her and have her see my son

  3. Anna says:

    I googled… this med is used to treat type 2. Not type 1. What type OP is having, remains a mystery

  4. Anna says:

    It was likely Monogenic Diabetes. It happens due to a single gene mutation.

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