How the health system failed me when I developed gestational diabetes

 

It was April 2021.

At 10 p.m., one night, I held a syringe loaded with 6 units of insulin in my shaking hand, my other hand pinching my pregnant belly. I was desperately trying to guess what placement may hurt least, sting less, work better. I had never given myself an injection, let alone into my third-trimester stomach, and never when my baby’s health was on the line. At that moment, I wished my healthcare team had better prepared me to self-administer injections.

A year later when I look back on my experience and despite the fact that I had a top of the line PPO policy with a major healthcare provider, I am underwhelmed by the gestational diabetes education provided once I was diagnosed at 28 weeks. The continuum of care, as well, left much to be desired.

I found out that I had gestational diabetes via a note in my patient portal. No one had bothered to call with the news. And no one called to follow up. The note read:

“Emma,
Your 3 hour glucose test result came back abnormal. You do have Gestational Diabetes. I will be referring you to Scripps Whittier Diabetes Clinic for management of Gestational Diabetes. You will be meeting a registered dietitian, registered nurse to go over diet, exercise and blood sugar checks. You will be checking blood sugars 4 times a day. Fasting should be below 90, 1 hour post prandiol [she meant postprandial] should be below 130. Make sure your diet has a mix of carbs, proteins, fibre [sic] Do not consume sugary foods, beverages. Avoid fruits for breakfast. Walk after each meal for at least 30-40 mins. You will get more info at the SW clinic.
Uncontrolled blood sugars can be harmful to the growing fetus. We will discuss more at your next appointment.
We will let you know when your referral is approved. Let me know if you have any questions.”

I had several. For one, what does it mean to be balance carbs, protein, and fiber? Aren’t carbs in everything, so how can I balance them with other items? If it is so dangerous for the fetus, why was no one explaining all of this right away and in person? Also, she left out the all-important piece of information: the amount of fat needed at each meal and snack. That I didn’t find out until later.

Meanwhile, I had to follow up myself to get that referral to the Scripps Whittier Diabetes Institute. They never called nor did my doctor follow up with them.

When I finally got an appointment, I learned to prick my finger over zoom under the tutelage of a soft-spoken diabetes nurse. As humans, we are hard wired not to touch things that will cause pain, let alone things that will hurt enough to make us bleed. I cried so hard the provider told me I could have my husband pull the trigger for me that night if I couldn’t do it. Ultimately, I managed to pull the trigger and squeeze blood drops out of my index finger.

Within the next few days, I quickly figured out a tip: if you press your finger into a hard surface (like a table or desk) and then inject from the side, it hurts way less. My perinatologist, who specializes in high-risk pregnancy care, was blown away by this idea when I told her at our next appointment. I pointed out that maybe it should be included in the handout with the information about checking sugars four times daily.

The next challenge was nutrition.

During the first weeks of my diagnosis, my stomach constantly grumbled. I ate mainly vegetables, since I knew those were healthy and most wouldn’t spike my sugar. I was terrified of high sugar numbers and did not know what I could safely eat. I lost weight initially, despite being in the start of the third trimester.

I wish someone had taken the time to explain what it means to eat a balanced meal. The nutritionist I met with said to balance items, but did not explain what that meant in a pragmatic manner for the kinds of foods I could eat. The sample meals given on a handout were confusing as they did not include explanations of why certain combinations were good, making it nearly impossible for me to apply to meals beyond the few examples given.

Within a few weeks, my fasting blood glucose numbers were out of the recommended range control despite diet and exercise. I had to start on insulin, and that meant a nightly insulin shot straight into my pregnant belly. My care team pressured me to learn injections over zoom. I fought to have an in-person meeting. They relented, but grudgingly.

During the training, the diabetes provider would only allow my husband and me to practice loading a syringe with saline. Even though we requested to, we were not allowed to practice injecting it. I pressed the provider for tips to minimize injection pain. She had none besides saying I would get used to it.

I had a panic attack that night — my husband had to do the first injection for me.

The next day we met with our perinatologist. She was shocked we had not been allowed to practice injecting saline, or that a provider could not help us with the first injection. I asked if I could ice the area prior to the injection to minimize the pain. She said I could. It helped substantially with the pain.

If the goal for gestational diabetes is maternal adherence to protocols that manage blood sugar to minimize adverse health outcomes for the fetus, it would stand to reason the healthcare system — OBs and diabetes providers alike — should better prepare mothers adhere to the rules.

Here’s what I wish all my providers had told me:

1. Prick the side of the finger, ideally index or middle, while pressing the finger into a firm surface; doing so minimize the pain of taking one’s sugar, or on some lucky days, eliminates the pain entirely.
2. Use a shot blocker and/or ice the area of insulin injection for 15 minutes prior to injection; it won’t make it painless, but it will hurt a lot less.
3. Do the injection yourself. It really does help it to be less painful, plus you can keep the needle from moving during the injection, which minimizes the pain.
4. Inject where you don’t think the baby will move – a moving baby while injecting hurts like the dickens.
5. A balanced diet means carbs (think fruit, bread, potatoes, crackers), fat (avocado, heavy cream, butter, etc.), and protein (nuts, meat, cheese, eggs) at every meal and every snack to flatten the proverbial sugar spike.

Providers treating gestational diabetes need to be far more empathetic and give practical advice to moms with this condition knowing the anxiety they have when experiencing a new malady that has immense consequences for their unborn child. All those carrying a child and battling this disease deserve much better.

Photo: David Bardin