Those who are having children/recently had a child: worried about them and T1?


(rdgove) #1

My husband has T1 and unfortunately, it is riddled throughout BOTH our families in 3 generations. I am now expecting a baby in January and we're terrified that our child will develop T1. We met with a genetic counselor who told us the chances of our child developing it were about 10-15% based on family history alone, with the general population's chances being .002%. We have decided to bank the baby's cord blood for the stem cells and we're choosing a pediatrician based at one of the best hospitals in NJ, which has a fantastic diabetes center. My husband really suffers because of this disease (he's having bs control problems and extreme lows/highs daily) and it worries me constantly. I'm just hoping for some support and if anyone has any insight or advice to share, I'd love to hear it. Thank you!

-Rebecca


(paulg765) #2

Hi Rebecca,

I can speak with some experience with your concerns as I am both a Type 1 diabetic and the father of a Type 1 diabetic son.  (My son Max is also a member of the Juvenation community.  Please friend him.)  First I would like to say that while I would have prefered that Max not develop diabetes, I consider having him as my son one of the greatest gifts this world has given me and my wife.  Moreso than me, he leads a full, successful and happy life with much for both him and us, as his parents, to be proud of.  He has always been very conscientious about managing his blood sugars, even now with riding a bicycle hundreds of miles a week.  The "genetics" are not within your control, but the way you educate, encourage and support your child in the event that he or she develops Type 1 certainly will be.  Enjoy the miraculous, wonderful and joyous experience you're living through right now, and cross the diabetes bridge if and when you come to it.

I should briefly mention that one of the most exciting and promising areas of research is in preserving the remaining insulin-producing capacity in newly-diagnosed Type 1 Diabetics.  There are new drugs being tested and likely soon to be on the market which will be designed for the newly-diagnosed Type 1's.  They should make it possible for the patient to take much lower insulin doses and not develop insulin resistance.  Even if Type 1 is not completely cured, there will be many constant advances in the tools and techniques of successful management.  It's completely different than 39 years ago when I became a diabetic, and even with the trials and tribulations I've had to face... I've really loved, and still love, my life.


(sarahslp) #3

Rebecca, try to take a deep breath and relax! The hormones during pregnancy can make your mind go crazy... But, it's not good for you or the baby to be under lots of unnecessary stress. I would obviously feel awful, and even guilty, if my son developed D. But, we have to look at the big picture on these things. I would never make the decision not to have a family b/c of a small chance of him developing D. He's such a joy in my life and it's worth the "risk." Also, every family has genetic risks for illnesses. If it's not D, it could be heart disease or whatever. Being pregnant with a first child is a huge change in your life ... I'm just coming out of the fog and my son is almost 16 months old, lol ... but try not to stress about something so out of your control!

Many of us on here are very successful in controlling our D. Maybe you'd feel better if you talked to your husband about making some changes to try to get his D under better control? You're in for many sleepless nights and busy days soon, so now is probably the time for him to do it, so he feels a bit more in control when the baby comes.

There are lots of people on here willing to help if you all have questions! Hopefully you'll be able to enjoy the pregnancy too. I was so busy worrying about my D while pregnant, I missed out on some other "typical Mom" memories... So, I hope you'll stop and enjoy what's going on too! Good luck!


(dianaA) #4

Hi, Rebecca,

I am almost in the same boat. I have type 1 while my husband does not and we are planning to start trying to have a child in the next few months. I have been questioning many of my doctors and specialists to see the chances of having a child with type 1. My endo says that I run the close to the same risk of having a child with type 1 as a "normal" person. He told me to register the baby with TrialNet (http://www.diabetestrialnet.org/index.htm) so that the development or non-development of Type 1 can be closely monitored.

In addition I will also be banking my child's cord blood just in case there is a need for it in the future (and if there is a way to use that to potentially cure their diabetes or maybe even my own).

Do you already have a hospital or medical group picked out for the pregnancy? I see that you are in NJ like me and from all of my doctors they have recommended St. Peter's University Hospital in New Brunswick.  They have one of the best high risk pregnancy groups in NJ.

I wish you and you husband all the best. Let me know if you find out any more news or stats.

-Diana