Christy Vacchio’s children were diagnosed with diabetes at a very early age. Their form of diabetes is called neonatal diabetes, something that most of us probably have not heard of before. Read Christy’s blog My 2 Sweet Babies: A Journey with Neonatal Diabetes.
I’d like to introduce you to Christy of My 2 Sweet Babies.
Tell me something about your children.
Andy is an airplane nut. He really had no choice in the matter because as soon as we found out it was a boy, the airplane paraphernalia started rolling in. Dan (my husband) has built and flown model airplanes from scratch since he was about 14 years old and now works as an airplane mechanic. His dad was a pilot and was the one who got him started in model building so it’s just being passed down to the next generation. In fact, Andy is so much of an airplane fanatic that he can usually spot an airplane in the sky before I can even hear it. Guess we have a future pilot on our hands!
Katie was just born in August of 2009 so we are just getting to know her. She seems to be a very happy baby and Andy has an uncanny ability to get her giggling just by looking at her. It’s also very odd that she looks almost exactly like Andy did when he was a baby. She is very determined and alert which can sometimes make her a little “diva-like.” Katie is definitely a Daddy’s girl and loves to fall asleep on Dan’s chest while they listen to opera. Her favorite singer right now is Andrea Bocelli.
How old were your children when diagnosed?
Andy was four months old. Andy was initially diagnosed as having Type 1 diabetes and was on insulin shots. He started an insulin pump just before his first birthday, but we found out about a rare type of diabetes called Neonatal Diabetes in September of that year and he has been on glyburide pills since January of 2007.
Katie was born in August of 2009 and we started her on glyburide as soon as she started spiking blood sugars over 200. She was diagnosed at 10 days old, though we didn’t get her actual genetic proof for another 2 weeks.
How was your child diagnosed? What were the symptoms? Was it a complete surprise?
Andy was displaying some odd symptoms within the first week of life. The doctors did all sorts of tests and just couldn’t find anything. At 6 days old, he got better and came home with us. He grew and developed normally for 3 months. When I went back to work in August, he got his first cold. I thought it was just something he picked up from daycare. For two weeks, he was losing weight, nursing every 2 hours for 45 minutes at a time, having really heavy diapers, and even lost muscle control in his neck. The doctors kept telling me it was a virus and it just had to run its course. They were even telling me I just wasn’t feeding him enough. The day he was taken to the emergency room, he was having trouble breathing and his babysitter had trouble waking him up after his morning nap. The doctors told us if we hadn’t brought him in, he would have died that night. His blood sugar was over 1000 and he was in severe DKA.
Just over a year later, an article was printed in the New England Journal of Medicine about children with Neonatal Diabetes who had been able to transition off of insulin and onto glyburide pills (normally a Type 2 diabetic medication). My new endocrinologist (we had just moved) wanted to have his DNA tested because his symptoms fit with the diagnosis of Neonatal Diabetes and not Type 1. The test results came back in January 2007 and he spent a week in the hospital being weaned off of insulin and put on glyburide. He has now been off insulin for over 3 years.
Katie was a little different. Since we knew what to look for, the pediatricians and endocrinologists agreed that we should just check her blood sugars and monitor her. Right from the start, she was higher than what most “normal” babies are. In the first two hours of life, she was 96 and 117 respectively. We sent off her cheek swab immediately to be analyzed and continued to monitor. At 8, 9, and 10 days old, she had at least one blood sugar reading over 200 so the doctor at the University of Chicago advised us to start her on glyburide even though we were still waiting on results of her DNA test. She responded immediately and we later found out that she indeed did have the same gene mutation as Andy.
How has your child’s life changed since diagnosis?
Of course, we were one of the lucky families whose children had this rare gene that responds to the glyburide treatment. The positive side of the diagnosis is that their blood sugars are very well controlled now. Andy’s blood sugars were all over the place when he was on shots, and a little better on the pump, but now he runs very stable in a tight range of about 80-140. Though he still has a rare occasion of a blood sugar below 70 or above 200, he is never in that dangerous area where we feel like we can’t handle it on our own.
The down side to his particular genetic mutation is that it is associated with developmental delays, particularly in the fine motor, speech, and cognitive areas. Andy just turned 5 in April and he is functioning cognitively and behaviorally at about a 3 year old level. That has probably been an even harder diagnosis than the diabetes itself. We are closely monitoring Katie because of this and so far she is developing mostly on track and is even a little ahead in cognitive and speech skills. She is only a little delayed in fine motor skills. We are hoping she may be a typically developing child due to the fact that we were able to get her on the proper treatment from the start and she was spared the DKA and brain damage Andy had.
How has your family’s life changed since diagnosis?
We had some really rough times, especially financially (I’m still paying on the medical bills!), but we’ve made it through together. I think it’s made us closer. It has also changed my career path. I have decided to go back to school to get my PhD in genetics. I hope to one day do research on Neonatal Diabetes so I can help other families with this rare condition.
I am also in the process of writing a book about our lives with this rare condition. I hope to get it published some time in the next year or two. My hope is that I can spread awareness because there are still so many doctors who don’t know about this and there may be many more patients out there who could have a totally different life if they only knew about it and could get checked.
How has connecting online helped you cope with diabetes? What online resources do you use?
Writing my blog has been very therapeutic for me. It helps me get my feelings out and not feel so alone in this. I was also very grateful to find a group of families like me. The University of Chicago is conducting an ongoing study of children with Neonatal Diabetes and they started an e-mail support group as well as a Facebook group called Neonatal Diabetes Registry. I have also been able to reach out to other parents of children who were diagnosed at a young age who may potentially have Neonatal Diabetes. They are now getting their children tested. If I only help one person, it is worth it.
How do you manage diabetes?
Glyburide pills. I only check Andy once or twice a day, but I still check Katie every time she eats because she is still growing so fast and I am still adjusting her dose. For Andy, when he is sick or going through a growth spurt, I tend to check him more often and adjust his dose until he is back in range. Just like Type 1 diabetes, growth and illness can make their blood sugars spike so we have to adjust accordingly. It’s a good thing I’m a math wiz!
What would you tell parents of a newly diagnosed child?
If your child is diagnosed under the age of one, please participate in the study to rule out monogenic diabetes. Even though most identified are under 6 months, I read a study of a boy who was diagnosed at 11 months old and he was monogenic and able to come off of insulin. You just never know.
Those of you with Type 1, just know that it does get easier. When Andy went on the pump, it quickly became second nature for us to calculate carbs and give him his insulin. And above all, try not to let every minute be about diabetes. Enjoy your child as a child, not just a diabetic.
What do you know now that you wish you had known at diagnosis?
That Neonatal Diabetes existed.