My pregnancy was pretty normal, until we went to our 20-week ultrasound. We were told that the wall between the ventricles in the baby’s heart appeared a bit thick (didn’t know the gender, we chose to be surprised!). This was really scary, as we had no idea what this might mean. We were referred to Maternal Fetal Medicine (MFM) for a more detailed ultrasound. This is when we were told that our baby had a cardiac rhabdomyoma, a benign tumor in the heart. Thankfully the tumor was not near any valves, therefore not affecting blood flow or the function of the heart. But with this finding, it meant that there was a 50% chance that our baby could have a genetic mutation called Tuberous Sclerosis Complex, or TSC. “TSC is a genetic disorder that causes tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs. The aspects of TSC that most strongly impact quality of life are generally associated with the brain: seizures, developmental delay, intellectual disability and autism.” (TSC Alliance) As if learning about the tumor wasn’t enough, this was added to the mix. What should have been an exciting time, seeing the baby on an ultrasound, turned into a very stressful time of unknown.

We then added cardiologist, genetic, and neurology appointments to our schedule. TSC affects every person different, there are people who have no idea they have it and there are people who are heavily affected. Doctors only know what could happen to her, not what will happen. In this time Sweetpea continued to grow and reach milestones on time, if not early, which was so encouraging for us and definitely what we needed. We were told of a medical trial that was using a drug that helps kids with infantile spasms, to see if using it can prevent kids from ever getting the infantile spasms. We didn’t feel comfortable using our daughter in a medical trial to see if the medicine could prevent something that there is no way of knowing she might develop, so we passed. I am so thankful that we did.

Throughout this time, I learned more about alternative, natural lifestyle, from places like the Weston A. Price Foundation (especially their podcast Wise Traditions), and my mom. I learned about the idea of epigenetics, that our genes only decide 2-4% of what occurs in our bodies. What decides how genes express is how our genes interact with our environment: the food we eat, what we put on our skin, what we breath in, environmental toxins, etc. I took this to heart. I decided to follow WAPF food introduction, planned to breastfeed as long as we can (still going strong at 23 months), and considered utilizing certain GAPS diet ideas as she got older, especially with the high rates of autism in TSC.

So, what does Sweetpea eat? She loves meat of all kinds, stock, most veggies (obsessed with broccoli at the moment), lots of fermented foods, fermented cod liver oil (she comes running when she sees the bottle), properly prepared nuts, fresh fruit, baked goods using almond flour (though she has on a number of times refused a GAPS cookie in favor of meat and kraut), homemade yogurt, lentils, and more. She loves to eat!

Another aspect of GAPS is reducing environmental toxins. We do the best we can within our budget. We purify our drinking/cooking water with a Propur and do the best we can with bath water. We very rarely use soap on her, and when we do it is a very clean brand. We use cleaner laundry detergents. Neither of us wear cologne/perfume, and we use clean soaps/shampoos for ourselves. We don’t use essential oils that can cause seizures (rosemary is an essential oil that can trigger a lot of people with epilepsy and is found in many popular essential oil blends). We are working on limiting her EMF exposure, but this is still a work in progress for us. We utilize homeopathy for the few times she hasn’t felt well (though I try to let her body work through fevers and illness; every time after she gets over a “bug” she has huge mental and development leaps, but that’s a different topic!). We use homeoprophylaxis for immune building. We use chiropractic care, though I have let that lapse a bit. We do whatever we can to keep the environment around her and inside her as clean and natural as possible to help her genes express in a healthy way.

I don’t think we would be where we are with her if not for GAPS diet. And not only is she in great health, it has made us focus on our own healing journey. Her journey isn’t over, it will be lifelong monitoring to see how the TSC is expressing in her body. This may not be the path that works best for everyone, but it has been the right path for our family. I want to thank Heather for being our support through this. I don’t know where we would be without her guidance and support. If you are wanting help on your or your family’s health, Heather can help you rewrite your health story.

Besides the benefits of healthy living and the GAPS diet in particular (for certain situations) here are few other things I want to express:

1. When someone tells you what is happening in their life, don’t down play it. So many people in the faith community told me “oh we will pray for it; your baby won’t have TSC.” This made me feel like they just wanted me to shut up about it. My husband and I believe in the power of prayer and healing, but also know that we live in a fallen world, where things don’t always go as we plan. We knew that we had to prepare ourselves that this was a possibility, but some people made me feel like to do so meant we didn’t have faith. So please be sensitive with your reactions. A simple “That’s really scary news, I’ll be praying for your family” is really all you need.
2. Know that there may be things going on you are unaware of in people’s lives. Until now we haven’t told a lot of people about this diagnosis, which means people probably think I’m being a crazy over protective mom that I don’t feed her certain things. “A little bit will be okay” “can’t she just try it?” The thing is we don’t know if it will be okay. So support parents in the choices they have made for their children; you may not know the whole story. This makes it tough to trust other people to watch her, because I don’t know if they will follow her dietary plans, and parents shouldn’t be made to feel that way. When people respect the diet that a pet owner chooses for their dog “oh we don’t let him eat people food” more readily than they accept a parent choosing to not feed their child the standard American diet, that is a problem.
3. Support those people in your life that are on specific diets on their healing journey, I don’t know what we would have done if Gramma Heather wasn’t our daycare when I work 2 days a week. Sweatpea eats better at Gramma’s than she does at home! Are you a grandparent that has a grandkid on a specific diet? Or have anyone in your life that has a specific/healing diet? Learn a few recipes that comply with it, it will mean so much to the loved ones in your life.
4. No, my child is not missing out on candy and sweets and junk food and pop. She loves the food she eats. She gets plenty of “sweet” from fruit, dried fruit, and honey.

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