Thursday, October 2, 2014

More Skin in the Game


He was six pounds and six ounces, and yes, he is a bit yellow, and has spent some time underneath some bili-lights in order to treat newborn hyperbilirubinemia.  (Photo: Copyright J. Krehbiel)


        I have been away from the blog and the internet entirely for  a couple of weeks.  My eldest daughter has been a juvenile diabetic since she was nine years old.   Juvenile diabetes is the Type I autoimmune variety which requires insulin for survival.  It is not the same disorder as the Type II diabetes which afflicts people in increasing number in the US, and can often be managed with weight loss and  dietary restriction.  My daughter developed Type I diabetes following a Coxsackie B4 viral infection which was prevalent that year in our area.  She is presently maintained using an insulin pump. She drives, graduated from university, has a good job and bought her own home when she was a single woman. However, the victories have been hard fought for, and often difficult. Juvenile diabetes can be profoundly disruptive to not only the life of a child, but to life, an education, family life, holidays, and lastly to the careers of the parents, because much time and attention must be paid to periodic regulation, as the child, teen or young adult grows.

            As late as 1981, Type I diabetic women were still being encouraged not to give birth to children, as the demands of pregnancy and glucose control were likely to cause or to contribute to kidney failure.  One of my closest friends chose not to have children biologically because she has Type I diabetes.   You may remember the character Julia Roberts played in Steel Magnolias who dies of complications of Type I diabetes with renal failure after having a baby, and this perception has stayed with many. Of course, we have always been reticent as we approached the days when my daughter chose to have a child. 

            Things of course, have changed.  The advent of  over-the-counter glucose monitoring devices rather than double voided urine specimens alone as a tool to determine sliding scale insulin doses,  has revolutionized the treatment of Type I diabetes.  Good and complete studies have also indicated that very tight and intensive glucose control of adults and children with Type I diabetes can result in their having the same life expectancy as the rest of us.   Insulin pumps don't take the job of endocrinologists and educated and well trained diabetics, but they can help to provide much better control and therefore a much better life than the autoimmune diabetic could have had otherwise.   An insulin pump works by providing a subcutaneous infusion of a basal rate of insulin hourly. It is ideally the amount of insulin that the patient needs to live if she doesn't eat at all.    Then,a calculated bolus doses of insulin can be dialed in to cover food.  These are called meal boluses.   This does not free the patient to eat bon bons and banana splits, but it does free the patient to eat a healthy diet and still keep blood sugars in the normal range most of the time. It can also be helpful in avoiding diabetic ketoacidosis, insulin shock, car accidents from the aforementioned two extremes of glucose levels. etc.   Since the insulin pump can be set to administer temporary basal rates, the user can run, or perform activities that would ordinarily deplete their blood sugar and require the user sometimes to snack when they don't really wish to.  It is now possible for a well controlled juvenile diabetic to at least theoretically have children relatively safely without sacrificing her kidneys, her vascular system, her vision, or her life, to do so.

            Insulin pumping still does not make glucose regulation elementary.   Particularly in women, many things trigger broad changes in glucose levels, and require a reworking of insulin dose via frequent injections or via the pump itself.   The insulin doses which worked will be thrown for a loop when the young woman starts having periods as most hormones directly oppose insulin.  Many women require an insulin adjustment every time they have a menstrual period, and this can be an increase of as much as 30% for those days.  Conversely, the increase must be removed quickly after the period is over.  Illness, even the flu can also throw blood sugar levels for a curve.  Dietary changes when a user goes to college will also trigger a need for insulin basal and bolus adjustments.  Sometimes these changes can be carefully made by trained diabetics and their families and sometimes, these changes must be undertaken by an endocrinologist.   Endocrinologists should have oversight over all insulin adjustments.  Pregnancy also challenges glucose regulation.  As the placenta and the baby grows, more and more insulin is required as a basal amount.  Sometimes, this amount of insulin doubles throughout the pregnancy, and then falls to below pre-pregnancy levels afterward.  Regulation can be a nerve wracking and labor intensive process.

         The babies of Type I diabetic mothers also need to be watched carefully.  The insulin injected by the mother's pump does not reach the baby through the placenta, but higher than normal levels of glucose do.  In response, the growing baby develops swelling beta cells in his pancreas to keep his own glucose level within the normal range.  After birth, these babies tend to develop hypoglycemia which can be quite dangerous until they adapt sufficiently to regulating their own blood sugar.    In addition, Type I diabetic pregnant women have higher potential pregnancy complications, including higher risks of miscarriage, stillbirth and birth defects, particularly of the heart.   They are generally followed with many multiple visits, ultrasounds and non stress tests throughout their pregnancy.  They do not necessarily have to deliver via cesarean section, although many of them tend to have larger babies.   During labor, Type I diabetics are often managed using an insulin driip infusion regulated by an intravenous pump. After delivery, many of these babies are cared for, at least initially, in a NICU.  Some of them will experience difficulties learning to feed, and will have trouble with breast feeding.  Breast feeding may also present some glucose regulation`challenges for Type I diabetic women.

          Somehow, this year,  my daughter managed to work a high powered job to which she is devoted, a Type I diabetic pregnancy, and a life in balance. Her little son was born in late September, following three days of labor and two hours of pushing.  They both remained in the hospital for a bit more than a week afterward.  I was present for private duty nursing, and her partner and I shared the tasks of labor coach.    This was a difficult and challenging set of tasks for her, and I don't think I have ever been more proud of a young woman who never lost focus, never became frustrated or frightened enough to stop doing everything exactly as she should.   My grandson is a very lucky little man to have her as his mother.

         I will still likely be away from the computer for a time.  As a person who works in preparedness, and with this new little soul here, I care even more about the direction in which the world is going.  With this little man now on the Earth, we have even more of a stake in what happens here, and even more "skin in the game".