Almost 2 years ago, a dear friend of mine found out that her 19 month old daughter had type 1 diabetes and was fighting for her life. Here's Theresa's triumphant story of how she was able to preserve her breastfeeding relationship while healing her daughter.
About a month ago a friend alerted me to a Facebook post that brought a wave of memories flooding over me from a day that changed my life forever as a parent. A day that I will never forget, even though I wish I could. It was literally the worst day of my life, but one that I will always be grateful for because it was the day my daughter’s life was saved.
The Facebook post was from a worried mom whose child was hospitalized after being diagnosed with type 1, “juvenile,” diabetes that very day. The mama was breastfeeding and was terrified not only for her child's life, but that she would lose the best way she knew to feed and comfort her baby. A little over a year and a half ago I was in her shoes. At 19 months old, we were told that our daughter had type 1 diabetes, was in diabetic shock, and needed to be rushed to the emergency room. She came very close to losing her life and was in critical care for a week at a children’s hospital.
While she was at her sickest (almost admitted to the ICU), she was not allowed to nurse. For as comforting as breastfeeding can be, not being able to do it during a time of crisis was torture. My daughter was barely conscious, was in pain and terrified while she was awake, and I could not even hold her because she wanted to nurse. I hope no other mama has to experience the excruciating helplessness you feel in a situation like that. Our children's hospital has no lactation consultants and, by the time they could find a pump for me, we had already skipped about 7 or 8 feedings. I was scared to death and in physical pain myself.
When we were finally given the okay for her to eat, I had to fight tooth and nail to be able to breastfeed her. The doctors finally consented to her having breast milk, but because she was not a tiny baby, the doctors did not think it was important. They told me that she absolutely had to drink from a cup or bottle. (I had a manual pump at home and did not respond well to it at all. I could not imagine how difficult it would be to have to exclusively pump.) I begged them to let me nurse her. It was my milk after all, whether it came from a pump and was poured directly into a cup or came straight from my breast. No mother should ever have to beg to be able to feed their baby. It took hearing our daughter scream and sob hysterically for the doctor to finally take pity on us and let me breast feed her. As I held my tiny girl in my arms, it was the first time I began to feel like there was a possibility that she would be okay. Still, we were encouraged to not let her nurse after that.
Eventually, we were able to meet with the hospital's diabetes dietician who helped me calculate the average amount of milk I produced per feeding. We looked at the amount of milk I was able to express with a pump then, by using the general amount of carbohydrates contained in breast milk, we were able to determine a rough estimate for carbohydrates per feeding. Together we came up with a plan to space out her feedings as much as possible to keep her blood glucose stable (after each meal and to go to sleep). The dietician was a lifesaver and a champion for us! She spoke with our doctor on our behalf and convinced him that including breastfeeding as part of our daughter's nutrition was in her best interest. The doctor has since become supportive.
Continuing breastfeeding brought my daughter so much comfort in the months of learning to live with daily multiple injections and painful finger prick blood tests. It was something normal and peaceful for both of us during a stressful time of adjustment. It supported her overall health. It was a perfect source of nutrition for her combined with solids and was amazing for bringing her blood glucose back up to a safe level if she began to drop low at night (we do use a fast acting sugar, like juice, instead if she is below a safe threshold). I am so thankful that we were able to continue our nursing relationship until she was 32 months old.
Type 1 diabetes (T1D) is a life-threatening, autoimmune disease in which a person’s body attacks their pancreas, causing it to stop producing insulin, a hormone needed to properly process carbohydrates in the food we eat. People with type 1 diabetes check their blood glucose levels every few hours and must inject insulin several times every day or continuously infuse with insulin through a pump. There is no known cause of type 1 diabetes and, at this time, no cure. It will never go into remission and cannot be reversed. As a mom, you can't help but wonder if you caused it somehow but, it just isn't possible that you did. It is not connected to poor diet or lack of exercise. Our daughter never has had a drop of formula, never had sugar other than that naturally occurring in fruit, never drank juice prior to needing it to treat hypoglycemia, and eats primarily homegrown, organic solid food.
Not many people think that a baby or toddler can develop type 1 diabetes, however it is definitely possible. Not all doctors think of it either and it is commonly misdiagnosed as the flu, with deadly results. It is very important to know the possible warning signs. I would recommend all moms be aware of any major changes in nursing. A sudden onset of increased nursing (past the length of time a growth spurt or teething would account for) along with much more frequent wet diapers can be a signal of diabetes. Diaper rash (especially without a history of it) and yeast infections can be symptoms of high blood glucose. Also, consider vitamin D supplements if a blood test returns low for vitamin D levels and investigate further if the test results are extremely low. The researchers think there may be a link between low vitamin D and diabetes, however they don't know if it is a cause of diabetes or a symptom of it. Our daughter had increased nursing and wet diapers, weight loss and developed labored breathing. Thankfully our pediatrician picked up on the problem and took action immediately.
Warning signs of type 1 diabetes can include:
• Extreme thirst
• Frequent urination
• Drowsiness, lethargy
• Sudden vision changes
• Increased appetite
• Sudden weight loss
• Fruity, sweet, or wine-like odor on breath
• Nausea or vomiting
• Heavy, labored breathing
• Stupor, unconsciousness
• Sugar in urine
Most importantly, if you feel that something is wrong, go with your gut and keep asking until you find answers! A quick finger prick test to check the blood glucose level can rule out diabetes. For this test, a small drop of blood from the tip of the finger is sampled. Results are often immediate. A simple urine test can also check for abnormalities. Undiagnosed and untreated T1D can become deadly very quickly.
If you have a little one diagnosed with diabetes, ask to speak to the nutritionist about continuing to incorporate breastfeeding into their nutritional plan. By pumping once and measuring the amount expressed or by weighing the baby before and after feeding they can help you determine the general amount of milk and therefore carbohydrates they receive at the breast with each feed. (Because it is an estimated number and not exact, they can often account for the difference in the allotted carbohydrate plan.)
Also, there are amazing support resources available for small children with T1D! Facebook groups like “Diapers & Diabetes” and organizations like JDRF offer support for families, education, a place for children to feel encouraged and like any other child, and help navigate the uncertain and ever-changing waters that are type 1 diabetes. Additionally, JDRF funds research and is constantly striving to improve life for type 1 diabetics. Most importantly, they are fighting for a cure for type 1 diabetes.
*** Please note that these are just our experiences. I'm not giving medical advice and don't claim to be an expert on diabetes--I'm just a breastfeeding mom doing everything she can to keep her daughter healthy! Seeing her grow and thrive, and watching her play momma and nurse her baby dolls, I think I might be doing an okay job.
If you want to learn more about type 1 diabetes, www.jdrf.org is a wonderful resource. For a glimpse into our life with it or to help fund a cure, please visit:
or watch our story at: https://www.youtube.com/watch?v=2Fc6r8HEnn0