IM PREGNANT! with TYPE 1 Diabetes

My sugar is out of control and I just found out I am 6 weeks pregnant. This is my first pregnancy and I really do not know what to do! Should I go full term or terminate? I am fearful of the complications of diabetes for myself and the baby however, I kind of want to have the baby! I’ve set up an appointment with my endocrinologist, dietician as well as my obgyn…
If you have type 1 diabetes with pregnancy please share your experiences.

Thanks!
Single girl who needs help…

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I am type 1 and went through three pregnancies 25 plus years ago. My first pregnancy was lost rather late in the game, but I did give birth to two live healthy babies. They are now 24 and 26 years old.

Get on board with your high risk obgyn as soon as possible. It’s a lot of work to be type 1 and pregnant. Lots of checking and adjusting and watching what you eat. Your insulin needs will increase dramatically as the pregnancy progresses. It’s a lot of work, but it can definitely be done. Lots of healthy babies come from type 1 mothers.

Best of luck with it.

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I am 6 weeks on my 3rd diabetic pregnancy. I have two wonderful daughters and am frankly excited about the prospect of another child. I have had quite a few pregnancy losses, but this one is going well so far (and definitely making itself very much felt in terms of blood sugar impacts).

You can do this, if this is what you want.

Diabetes in pregnancy takes a lot more efforts, but it is manageable.

You will need to aggressively increase your insulin dosing (along with very frequent monitoring, and corrections as necessary). Hopefully you will be confident and experienced enough with managing your diabetes to do this. I would recommend eating lower carb, which will also help with sugar control. Get in with your doctor asap.

Best wishes to you.

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You can totally do this! I had 4 children as a T1D. And I never used a pump or CGM. Monitoring blood sugars, exercising and eating well were all hard work, but it can be done! Agree with others in this thread. Find a good high-risk OB soon. And an endo who understands. I can put you in touch with someone who works remotely (a naturopath) if you want.

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Please do not terminate!
I had some crazy numbers at the start of my last pregnancy, but you can get things under control and manageable. Now my daughter is 20 months and she is the sunshine of my day, I cannot imagine life without her.
Now I’m 9 weeks pregnant, second time, and I’m so looking forward to meeting this new little person growing inside me.

The numbers can be such a challenge, but I think you’ll find that the “sacrifices” and adjustments you make now are nothing compared to the gift you will receive, and keep receiving with each kiss and hug they give you!

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The chance of a type 1 diabetic mother passing type 1 diabetes on to her children is about 16 times higher than for a non-diabetic mother, so the pregnancy imposes a large risk of a very serious problem on a child who cannot be asked in advance whether he or she consents to that risk. Parents are usually criticized for exposing their children to serious risks, such as when Michael Jackson dangled his infant son over the balcony of a Berlin hotel and was subjected to worldwide condemnation, not for hurting his son, but just for imposing that risk on him.

When I had to decide as a type 1 diabetic whether to have children or not, I chose not to because of my ethical concerns.

Everybody is welcome to their opinion.

However I wholeheartedly disagree with this particular viewpoint.

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Dear @Imanileigh – this is one of the most personal and weighty decisions a woman can make in her life. There are many, many factors to consider – I am sure also in your case – that go far beyond the presence of T1D as part of the picture. For that aspect, I would refer you to our specialized sub-forum on pregnancy and diabetes here: https://forum.tudiabetes.org/c/diabetes-and-pregnancy. You can browse through all kinds of stories, which, while maybe not fully representative, will give you realistic ideas of some of the typical things you can expect.

Yes, there are increased risks both during pregnancy and after, but you need to consider them all in perspective. (And especially with the help of a medical team you trust, so it’s very good that you immediately set up all those important appointments.)

[Here I am specifically going to open a big parentheses to comment on one of the responses above, regarding drawing a straight line from “I have T1D --> I am not going to have children since I would be exposing them to the risk of having T1D.” First, while the incidence of offspring with T1D from diabetic parents does indeed increase compared to offspring of the non-diabetic population, it is still ultimately a very low risk on average. Second, the majority of T1D diagnoses are of people who do not have other known cases of T1D in their families. Third, the risk that a diabetic mother will pass on the condition is significantly lower than that of a diabetic father.

While the exact numbers are not settled (there simply are too many other factors that impact the prevalence of genetic transmission, let alone whether the predisposition develops into the disease), here are a couple of helpful snippets:

A. “Just who is at risk for developing type 1 diabetes? Here’s a sampling of what Dr. Warram, a Lecturer in Epidemiology at Harvard School of Public Health, said is known: The risk for a child of a parent with type 1 diabetes is lower if it is the mother — rather than the father — who has diabetes. ‘If the father has it, the risk is about 1 in 10 (10 percent) that his child will develop type 1 diabetes — the same as the risk to a sibling of an affected child,’ Dr. Warram says. On the other hand, if the mother has type 1 diabetes and is age 25 or younger when the child is born, the risk is reduced to 1 in 25 (4 percent) and if the mother is over age 25, the risk drops to 1 in 100 — virtually the same as the average American.”

He goes on to assess how these numbers should or shouldn’t be interpreted when a person is making the decision whether to bring a child into this world: “To be told a child has a 4 percent or 10 percent risk of diabetes sounds very absolute and scientific,” he says. "But a myriad other things can go wrong with a child — medically and socially — and these risks cannot be measured precisely. Also, there are a myriad other things that can go right for a child. Even if a child does develop diabetes, it needn’t prevent him or her from finding success and happiness in life. Raising children — whether they are your own or adopted — is an experience involving risks of great rewards and risks of great costs that can’t really be known in advance. If a number can be attached to one of those risks, should it weigh more than the others?"
From http://www.joslin.org/info/genetics_and_diabetes.html

B. "By 20 years of age, 5–8% of the offspring of diabetic men and only 2–5% of the offspring of diabetic women have been found to be affected."
From https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2797923/
(Obviously this is just one study on the topic, and limited to the population on Finland, which happens to have a fairly high incidence of T1D, but it does include a very good set of references to earlier studies exploring the same question. So I’d specifically recommend looking at the citations 1-8 in the bibliography at the end as well.)]

If you do decide to have a child, there are things we know improve the odds of a healthy pregnancy and healthy baby: tight BG control, taking a large supplemental dose of folic acid and vitamin D (in addition to the general prenatal vitamin you should be taking), staying hydrated, keeping up reasonable levels of physical activity, not putting on more than the recommended for you weight, going for all your extra monitoring visits, minimizing stress.

Bottom line, I think anyone asking themselves this question should answer another one first: am I in a position to be the kind of parent I would describe as a good parent for this child? It’s a big question and a “yes” or a “no” can be predicated on an infinite variety of combinations of factors, but its answer is the only thing that matters when a human being is born.

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We have very good evidence that type 1 diabetes is not entirely genetically conditioned, such as Huntington’s Disease is, for example, since even twins can be disconcordant for type 1 diabetes. However, even though there are other causal factors involved, we can do little or nothing to control those, since they are probably due to viral triggers in the environment which our children cannot avoid. The sole factor we can control is whether we decide to pass our genes, disposed as they are to make diabetic children, into the gene pool.

It is correct to say that the risk of a type 1 diabetic mother passing diabetes to her children is small, only one in 16, and that for a diabetic father it is still only one in 10, but since it is generally considered immoral to expose your children to unnecessary risks of serious harm, it would seem that passing on the diabetes risk is also something we would want to avoid. That is why I used the example of Michael Jackson dangling his baby over the hotel balcony, which won worldwide condemnation. Perhaps the risk to the baby of harm from being dropped was the same as the risk of a diabetic parent passing on diabetes, and perhaps the injury from being dropped would have been as severe a medical problem as type 1 diabetes is, but still, the public condemned it. If told letting your toddler run out into the street would only cause a one in 16 risk of its being hit by a car, and that the damage to the child would be a lifelong, incurable compromise of health equivalent to type 1 diabetes, would you say, “Well, let him go then”?

Diabetics often complain of the extremely slow progress to a cure for a disease, but they hold the power themselves greatly to reduce the impact of type 1 diabetes on the future world by not having any children, which is at least part of the way toward curing the problem.

While I can appreciate and respect anyone’s choice to not have children for concern of passing on diabetes, it is a personal choice and certainly not a black and white consideration.

I don’t think the risk of bearing children who might develop diabetes is comparable to dangling a child over a balcony or allowing them to run into the street. I have a child with diabetes and I adore him and am so happy that he is part of my world. He brings me joy every day. Yes, diabetes is a struggle and it downright sucks at times and gosh darn it, I wish this was a burden Caleb did not have to bear, but is the alternative no Caleb? The risk of dangling a child or sending them out into the street is completely unnecessary with nothing to gain from it. I just do not see these scenarios as legitimizing what is a valid consideration. It’s taking it to an unnecessary extreme in my opinion.

It’s been over a week since @Imanileigh posted. I’d love to hear how you’re doing and how we might be able to provide support and encouragment. Thank you @Dessito for highlighting the diabetes and pregnancy category.

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Seriously ???

I don’t want to be a jerk about it but really - sometimes I feel that an ANTI-LIKE button option would be nice.

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Of course it all depends on the child’s perspective, and it is important to keep in mind that some people with severe diabetic complications may wish they had never been born, so coming into existence for them may not be an advantage outweighing the risks of diabetes. The problem is that in deciding to force life onto someone by bringing them into the world, we can’t know how the risks we impose on them will turn out, and we are making a decision for someone whose views about the risks and benefits cannot be consulted in advance.

To my knowledge there is no T1 in our family but there is another equally devastating genetic disorder. This defective gene is inherited by every female of a father that has this disease, strangely his male children cannot inherit it. Almost all female children that inherit this gene will become carriers, it is extremely rare for them to get this disease but their male children will have a 50% chance of inheriting and developing the disease. Female children of a carrier have a 50% chance of themselves being a carrier. My wife is a carrier.

We did not know the genetic component of my father in laws disease at the time we planned our family, The facts of this disease were only revealed to us after our children were born. My wife and I both have said had we known we would be a childless couple or adoptive parents. We have two sons one of which has lost this game of genetic Russian roulette.

This is a long explanation of why I understand @Seydlitz feelings. We would not have created a child with such poor odds. But because we do have our sons we cannot now imagine our world without them. If we had the chance to redo our lives to not have children I’m not sure we would or could, it would be hard to give them up now.

This is a moral decision based on the odds that are given. We must each decide what are acceptable odds if we are to ever be comfortable with our decision. What the rest of the world thinks is irrelevant. Whatever decision is made it should never be second guessed.

FWIW, I believe my son has chosen to be childless. I respect his decision.

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Imanileigh,
I found this book very helpful in managing expectations of the journey of T1 pregnancy:
Balancing Pregnancy with Pre-existing Diabetes by Cheryl Akron

Good luck to you and I hope you are doing well!

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Interested in where you got those stats… Type 1 mother’s over the age of 25 have about a 1% chance of passing on the disease, about the same as a non-diabetic mother (aka plain-old-chance):

If the mother has type 1 diabetes and is age 25 or younger when the child is born, the risk is reduced to 1 in 25 (4 percent) and if the mother is over age 25, the risk drops to 1 in 100 — virtually the same as the average American.
-Joslin Diabetes Center

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The incidence of type 1 diabetes (that is, the proportion of new type 1 diabetes births) varies from 40 per 100,000 per year in Finland to 0.1 per 100,000 per year in Asia and South America. The lifetime risk of type 1 diabetes for a member of the general population is 0.4%, or 250 to one, but greater than 1% if the mother has the disease, so more than 2.5 times greater than normal. If the father has type 1 diabetes, the risk of the child having it is 3%. If a sibling already has it, the risk goes up to 6%.

Source: K. Mehers and K. Gillispie, “The Genetic Basis for Type 1 Diabetes,” British Medical Bulletin, 88 (1) 115-129 (2008).

Odds of passing it on change with the age of the mother though, and with the age at which she was first diagnosed. It’s certainly not a cut and dry inheritance like many diseases. There are a lot of things you can do to decrease your offspring’s risks for sure.

What sorts of things reduce the risks?

The risk is determined by genetic factors as well as environmental ones, so altering the environmental influences offer opportunities for intervention after the child is born. Studies have suggested that vitamin D, infant formula without cow’s milk, breast feeding as long as possible, and delayed feeding of gluten products until the age of 12 months might all postpone the development of type 1 diabetes in a child born with the genetic disposition to develop it. Giving at-risk children low doses of the immunosuppressive cyclosporine, or treating them with oral insulin, might modify the immune system to delay onset of the disease.

Ideally, at-risk children should be insulated from whatever types of viral infections that spark the susceptible immune system to turn against itself and destroy the pancreatic beta cells, but viruses are so ubiquitous this is not a realistic possibility.

Greater maternal age when the child is born and higher birth weight of the infant seem to increase the risk of a diabetic child, and having a Caesarean section may heighten the odds very slightly. (1)

  1. Y.-L. Wu, et al., “Risk Factors and Primary Prevention Trials for Type 1 Diabetes,” International Journal of Biological Sciences, 9 (7) 666-679 (2013).