When our first-born child was diagnosed with Type 1 diabetes at 15 months of age, thoughts of having a second child was the farthest thing from our minds. The first few months, we were fighting through our emotions just trying to get by day to day and keep Coral alive. The next two years were a struggle to adjust to our new lives and find financial stability to better provide for her lifelong medical needs. Some friends and family members couldn’t provide the kind of support we needed. We adapted and moved on with our lives because we had to for Coral’s sake. In fact, we waited four years until we finally decided to plan for baby number two.

Kaila [Kah-e-lah] finally arrived in early March four days past her due date at a local hospital in Santa Monica, CA. Kaila in Hawaiian means stylish or fashionable – just like her mama. Wink, wink. It would’ve been ideal if we could have stayed in Hawaii and gave birth to her there like Coral and myself along with all previous generations of my family, but life threw us too many sour lemons. We’ve made a new life in Los Angeles and lots of diabuddies that we’re grateful for.

Preparing for Kaila

We knew we were going to need some reinforcements and arranged for my Aunty to fly up from Honolulu, HI to Los Angeles about a week before Kaila’s due date. I spent a great deal of time gathering some resources from JDRF, Beyond Type 1, and Type1Basics – including my blog, to forward to her email prior to her arrival so she could familiarize herself with basic T1d knowledge and set some realistic expectations. The plan was to get her up to speed in hopes that she could help us take care of Coral before, during and after I went into labor.

My water broke about a quarter to midnight on Wednesday, March 6th and Kaila was born at 9:10am on March 7th. Coral’s Dexcom G6 sensor failed before its 10th day while I was in labor and I was texting my Aunty back and forth and passed it on to my Hubs before pushing Kaila out through my vag. Needless to say, that was the ultimate sensor fail to-date (see my full Dexcom G6 Review here). I was more concerned about Coral’s safety than my own and had confidence in this next child birthing experience.

Even though Aunty wasn’t capable of managing Coral’s T1d the majority of her stay with us, we were very thankful she was there to help us in that most dire time of need. Special thanks to one of my fellow pancreas momagers known as @t1d_littlemiss on IG for coming over to our house the next morning to further assist my Aunty with Coral until my Hubs could return home the next day. I seriously don’t know what I’d do without my Diatribe.

Thankfully, my husband is also doing night checks and changing her pods and Dexcom G6 sensors. He’s the brains behind all my technical reviews and I find innovative ways to make managing her diabetes less cumbersome. See our site changes via IGTV channel on Instagram.

Shown left to right: Enfamil D-Vi-Sol liquid vitamin D drops (available over the counter at Target, CVS, Walgreens, Amazon.com), Holle Stage 1 goats milk formula, formula storage container with scooper in separate compartment (Amazon.com), and Tomee Tipee 9oz bottle (Amazon.com)

Goats Milk Formula

It’s been 16 weeks since Kaila was born and she’s growing strong, healthy and fast! We’re still getting used to the idea of having a second child in the house, managing Coral’s T1d and her crazy bad tantrums, and achieving balance in this already hectic T1dlife. I never thought I could be more sleep deprived than I already am as a mother to a Type 1 toddler. There is not enough coffee or wine that can keep my sanity sometimes, but seeing my girls happy keeps me going.
 
My breasts were always painfully engorged with Coral and same with Kaila up until about the 9th week. I was having to pump milk in between trying to nurse her and freezing bags to stockpile it up. Unfortunately, my milk has slowed down to nearly nothing despite various methods of maintaining my supply. I’d try to nurse her again, but she has what I’ve recently learned, as a hard palate and not able to open her mouth wide enough for a deep latch leading to painful nipples. I was also afraid of getting mastitis again as I did when trying to nurse Coral who also had difficulty latching on wide enough likely due to a hard palate as well. Every birth is different and so was my postpartum experiences. Not the kind of shit you see on Instagram. My hemorrhoids sucked this time around.
 
I anticipated all of these scenarios prior to Kaila’s arrival and researched the best type of formula for her. I’m definitely worrisome of Kaila developing T1d as well and want to eliminate as many variables as possible. I recalled reading an article about cow’s milk formula and it’s correlation to Type 1 diabetes on the US National Library of Medicine National Institutes of Health’s website. It spoke of how early exposure to cows’ milk and cereals can influence the environmental risk factor in the development of T1d in genetically susceptible children. Another fellow mom and T1d herself also strongly suggested goats milk over cow’s milk for the same reason and that it has less sweeteners and additives. However, more recently, Coral’s endocrinologist said that researchers weren’t able to conclude whether or not cow’s milk does increase the risk of developing T1d in adolescents (see that medical journal here). 
 
Even though T1d is not preventable, at least giving Kaila goats milk will help ease my mind a little. The same research paper also mentioned that the duration of breastfeeding does not have any contribution to the onset of T1d either. That was a huge relief when I read it because I surely blamed myself the first year after Coral was diagnosed. Feeling guilty or angry at this disease is perfectly normal. I’m constantly learning how to work through those emotions and use it as motivation to educate myself even further to better manage this chronic autoimmune disease. 
 

Risk of Siblings Developing T1d

Some medical researchers say siblings of T1ds have a greater risk of developing the autoimmune disease too. I can’t tell you how many times I’ve heard non-diabetics and even regular physicians tell me, “Type 1 diabetes is genetic.” When statistically, Type 2 diabetes has a higher genetic probability than T1d. Nobody in my entire family from generations back has/had T1d, but being Asian / Pacific Islander, we’re more prone to T2d. Even my hubs doesn’t know anyone in his family with T1d. It’s also possible that many people go undiagnosed in his home country in China due to the lack of education and resources. Some families may carry a combination of HLA genes known as a haplotype (such as HLA-DQA1, HLA-DQB1, and HLA-DRB1) that put them at greater risk of developing T1d. It’s believed that these particular genes in combination with an environmental trigger such as a virus can increase the risk of an inappropriate response in the immune attack on the pancreas’ beta cells. On a positive note, one may still be at a genetic predisposition and not develop the autoimmune disease at all.
 
We are still not certain whether or not we carry this haplotype or any of the five autoantibodies that make up the virus that supposedly triggers the immune attack. If we choose to find out, we can look to TrialNet for risk screening. I believe we will get Kaila tested after she’s 2.5 years old – the youngest age they’ll do the free screening of family members of a T1d. Learn more about TrialNet and the screening process here.
 
It’s important for us to remember that no matter whether living with this disease or not, it is still possible to have a long, healthy, prosperous, happy life. Living with T1d requires a ton of work every minute every day, but it will pay off. Long-term diabetes complications are preventable. It is worth the extra effort to stay educated and strive to thrive. Especially, when it comes to the health of our children.

Worth the Risk

We probably would’ve been fine with Coral growing up as an only child, but understood the importance of her having a sibling to help her through the hard times and relish in her accomplishments in a manner that we might not be able to as parents. A strong bond with a sibling is something I never had growing up in a broken family as a middle child. I’m hoping Coral and Kaila will be the best of friends and it’s strongly evident already. Having this pregnancy, enduring a rather difficult postpartum experience, and seeing my girls grow together despite all these risks is indeed worth it. As parents of a young T1d child, we may always carry this fear of our second child developing an autoimmune disease. However, we also know how to use that fear as motivation to be more aware of the signs and symptoms if it ever happens again. We’re always hoping for the best and preparing for the worse. Ohana is stronger together.

Aloha,

Shelsea

Update

In July, both my husband and I went to a small JDRF event and TrialNet was there. They did a blood screening and we received our results in about 3-4 weeks. We tested negative for two of the main five autoantibodies. This means we are not genetically susceptible to Type 1 diabetes which I kind of knew already since absolutely no one on either side of our families has T1d. Families or patients who carry at least two or more autoantibodies need to do further screening and should speak with their primary care physician and/or to seek a referral to an endocrinologist. It becomes a waiting game but eating a lower carb diet early-on might help prolong the life of any remaining beta cells. Learn more about TrialNet here. Always do further research on your own especially when a doctor/doctor’s aren’t giving you the answers you seek.

Look up clinical trials for T1d at Clinicaltrials.gov. Start with the sources I’ve listed below. Medical journals are always better than Healthline or WebMD. You can’t always trust whoever writes those articles especially if they’re not actually living with the same disease as you or your child. Definitely do NOT rely on social media for any sort of medical advice especially during the early stages of diagnosis. Stay strong and have faith.

Sources

US National Library of Medicine National Institutes of Health. “Early exposure to cows’ milk raises risk of diabetes in high risk children.” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1173447/. (Accessed 15th June 2019).

US National Library of Medicine National Institutes of Health. “A1 beta-casein milk protein and other environmental pre-disposing factors for type 1 diabetesUS National Library of Medicine National Institutes of Health.” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5518798/. (Accessed 20th June 2019).

JDRF. “Type 1 Diabetes Facts.” https://www.jdrf.org/t1d-resources/about/facts/. (Accessed: 3rd July 2019).

JDRF. “Causes of Type 1 Diabetes.” https://www.jdrf.org/t1d-resources/about/causes/. (Accessed: 3rd July 2019).

US National Library of Medicine National Institutes of Health: Genetics Home Reference. “Type 1 Diabetes: Genes.” https://ghr.nlm.nih.gov/condition/type-1-diabetes#genes. (Accessed: 3rd July 2019).

Centers for Disease Control and Prevention. “Basics: Type 1 Diabetes.” https://www.cdc.gov/diabetes/basics/type1.html. (Accessed 3rd July 2019).

Beyone Type 1. “Warning Signs of Type 1 Diabetes.” https://beyondtype1.org/warning-signs-of-type-1-diabetes/. (Accessed 3rd July 2019).

Further Reading

Beyond Type 1. “Type 1 Diabetes With Other Autoimmune Diseases.” https://beyondtype1.org/type-1-diabetes-with-other-autoimmune-diseases/. (Accessed 3rd July 2019).

Kids Health. “Other Autoimmune Diseases That Are More Common in People With Type 1 Diabetes.” https://kidshealth.org/en/parents/other-diseases.html. (Accessed 3rd July 2019).

Published by Shelsea

Pancreas momager

2 thoughts on “Worth the Risk”

  1. You are so brave. I actually have a question. I have already had the VIRUS and got over it relatively easily. But my mother (74, heavy and has type 2 diabetes) is obviously in incredible danger on a daily basis. Now that I am over 6 weeks healthy (Thank god!) I fear I can get her sick. My Dr is always cautious so he’s no help. All I have had to go on are two friends who (after I was sick) saw my symptoms and got tested – and found they had antibodies. (both got sick very early and had such mild symptoms) I guess hats off to those with strong bloodlines right? The weird part, I don’t know if either got any member of their family sick. BTW totally separate people. They have never met but their situations parallel mine. Anyway neither Darren (lives in Santa Monica) or Josh (lives in the Marina/Playa area) got their families sick. Anyway, the question is; can I have my mother over for dinner or is it too dangerous?

    Liked by 1 person

    Reply

    1. Hi there,

      Short answer: No. It’s too risky. Keep in mind, struggling Covid-19 patients die alone in the hospital and visitors are NOT allowed. Asymptomatic people and those with antibodies can still potentially spread the virus to others who may be at a higher risk/more vulnerable (underlying health conditions, immune suppressed, or autoimmune disease prevalent such as T1d). BOTTOM LINE: Stay home as much as possible, continue to be vigilant with hygiene and sanitize everything in-home and wash hands for 20 seconds religiously, and stay away from people who refuse to wear masks just because they have the antibodies. People who refuse to wear masks show a sign of privilege: they haven’t struggled hard enough nor been around death long enough. Stay safe. Make smart choices. For your family and everyone else’s families. Read that Coronavirus blog post for tons of more medical sources.

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