MY Son

On a cold January morning in 2011, I gave birth to our son Luke. We had found out several weeks earlier, from a routine ultrasound, that our son had a birth defect. This defect was called aortic stenosis - a narrowing of the valve in the aortic artery. This narrowing keeps the valve from opening fully, reducing blood-flow to the body and making the heart work harder. In minor cases, no surgical intervention is needed, in more severe cases, like Luke’s, surgical intervention is necessary and can be done by ballooning, repairing, or replacing the valve.

The morning he was born, he had his first surgery. They tried to correct the narrowing of the valve via valvuloplasty - a catheter with a balloon at the tip is guided on imaging to the narrowed valve and the balloon is inflated and then deflated - opening up the narrowed area. This procedure was not able to provide the blood flow that was needed for Luke.

HopE

That evening, the surgeons came to us and told us that Luke’s numbers did not look good and that the because of where he was at after the procedure, the only options left were to let him pass away (as would happen naturally with the severity of his condition) or choose to have him wait on life support for a donor heart. When we asked what the donor option might look like, they let us know that often babies pass away waiting for a donor heart. Struck by this news, we decided to go down to the PICU and pray over our precious son.

A Prayer, an Answer

As we prayed over our son, my husband said, “Lord, please take this decision from us.” We were interrupted by one of the surgeons, popping his head into the room excitedly letting us know that they had just reviewed Luke’s most recent numbers and it seemed that his ejection fraction - the volume ejected from the heart chamber with each contraction - had improved; and the other surgeon thought that if his numbers continued to improved, Luke could survive open heart surgery to correct the valve.

That weekend, we prayed each day and our prayers were answered. His ejection fraction improved, making him a candidate for a procedure called Ross-Kono. In this procedure, the pulmonary valve (part of a lower pressure system) is removed and placed on the repaired aortic (higher pressure system) side of the heart. Because the aortic valve is a higher pressure system, donor valves wear out quickly. By taking the pulmonary valve and placing it on the aortic side, they are able to reduce the need for frequent valve replacements since the individual’s own tissue will grow with them. A donor valve is then placed on the pulmonary side - this valve needs to be replaced, but less often.

Luke went into surgery that next week and the surgery was a success! He had made it through and was recovering beautifully.

Recovery, not always up

They had used a ventricular assist device to help Luke’s heart recover and heal for a few days after the extensive procedure. This device is able to take over the cardiac function partially or even fully. This required Luke’s chest to be left open - we would actually see his heart beating in his chest - and the blood continuously looped through the machine as is oxygenated Luke’s blood for him, taking over the workload for the heart. There had been a lot of scar tissue in the heart from pumping against the narrowed valve in utero that the doctor had removed in hopes that the heart would function better post surgery. The third day after surgery, they decided to wean him off of the device. As they did this, 3 clots were sent into circulation and one caused Luke to have a stroke. The stroke was quite extensive and left us devastated.

The stroke was then followed by months of issues and near death scenarios for Luke. Shortly after this he developed sepsis, chylothorax - which when is lymphatic fluid was leaks into his chest cavity, renal failure - where he turned gray and unresponsive almost to the point of death, had multiple surgeries - including a cholecystectomy (removal of the gallbladder) due to interventions that took place. We lived in the hospital the entire winter. Each day was stressful and filled with new unfortunate surprises. But, our faith grew.

In the spring, we finally went home with our son. Albeit, we left with monitors, a nasal feeding tube and many appointments. But, we were home.

Seizures

During the next several months Luke developed seizures - infantile spasms. Small seizures that look like a startle. These seizures are very damaging to the brain. After trying medications, the ketogenic diet, high dose B6, prednisone - we ended up doing ACTH injections. These were two intramuscular shots administered daily. This was something Ryan and I had to do together. Each morning we woke up early with him before Ryan went to chiropractic school to do these shots. Although it broke our hearts to do these injections, they were really our last hope. After a period of time, the injections helped to stop the seizures. Although this would not be the last time we went through periods of seizures (as he later on, developed other seizure disorders) we were grateful that this had helped him. As he had been having hundreds of seizures per day.

This was a time of immense stress for Ryan and I. On top of this we were away from family in Iowa, since Ryan was at Palmer Chiropractic school. (I had found out I was pregnant with Luke a month after we had moved to Iowa for his schooling). By grace, Ryan was able to keep up with school the entire time all of this was going on. Most of my days were spent alone with Luke as Ryan was in school most of the day and when he was home there was a lot of studying to be done. I had finished my bachelor’s degree in biology a year and a half prior to us moving. My plan had been to go to chiropractic school as well, but after much consideration had decided not to. I had quickly understood why things had been put on hold after we had Luke!

course changes

When Luke was a little over a year old, I found I was pregnant with our daughter Adalyn. What a surprise this was, we were excited, but also overwhelmed.

While I was pregnant with her, Luke (18 months old now) went in for a routine cath procedure to look at his heart function. We walked around the campus of the University of Iowa Children’s Hospital while he was in surgery enjoying the spring day and talking. We were shocked to be paged in just a short period of time, letting us know that Luke was out of surgery. We figured this was probably good news. Luke’s cardiologist, a kind man in his 50’s, sat down with us to let us know that the findings of the cath procedure had confirmed that Luke needed a heart transplant as his heart was not able to relax as it should - interrupting it’s ability to fill will blood properly before squeezing. At this time he had also been considered “failure to thrive” due to his inability to put much weight on, putting him in the 3rd percentile for weight.

We were given information on the possibility of a heart transplant and another decision to make. After much consideration, we decided to put him on the transplant list. This meant we had a pager, had to stay within a certain distance of the hospital and more appointments.

While We Wait

During this time we prayed, we asked God for help. Help to know what we could do to help this little child prepare for a major surgery (should it come). I started reading. I read books, articles, research. At this point, I only had my bachelors in biology and reading research had not become a strong-suit. But, I learned. All I was searching for was a way to help him be as healthy as possible going into surgery in hopes he would survive the transplant and respond favorably. I wasn’t sure it what would happen, but I I didn’t want to look back and have any regrets. At that point, it was the one thing I felt I could do.

Changes

In my reading, I found information on gut health and the connection to brain health, growth and development. After weeks of looking at various gut healing diets, I decided on one and got started. I made everything he ate from scratch - I learned to make yogurt, sauerkraut, bone broth, my own sausages - everything. At first, it was overwhelming, but after some time, I fell into a routine. The diet removed, grains and processed foods and focused on organic produce, high-quality pastured meats, broth, raw dairy and other healing foods. Up to this point, Luke had not really liked eating. But, after a short period on the diet, he became ravenous! So much so, that my whole day was literally spent sourcing and making food for him.

At one point, I went and stayed at my parent’s house just to have some company during the day while I was making food! He started requiring 2 breakfasts, 2 lunches and one dinner each day. I gladly fed him and he started to grow and gain weight. My skinny, lanky child became ruddy and beautifully chubby. I fed him many fermented foods to help restore gut bacteria (he had been on many rounds of antibiotics in the hospital), foods high in omega, varieties of plant fibers that fed his bacteria in his gut, egg yolks and liver filled with nutrients he needed.

We started the diet in August and by December he was in the 56th percentile for weight (he had been in the 3rd percentile just 4 months before) and doctors started to note that his heart function was improving on EKG. Still, after several months on the transplant list, we had not received a call letting us know a heart was available for him; this was a blessing in disguise. After more months with marked improvement, he was put on a hold status for the transplant list and then later taken off of the transplant list - because his heart function had improved so much that he did not need the transplant anymore. They told us that this had never happened before and they asked for information on the diet we had been using. They were shocked and so were we. We were grateful for this miracle.

We still had many surgeries and hurdles to cross, but this was a huge change for us as we saw the impact that simple guided diet changes had brought about. As our knowledge grew, so did the help Luke was able to receive.

We have had many physical and health challenges brought about from the stroke. Luke’s stroke was a left MCA stroke. This type of stroke affects gait and speech. In Lukes case, it has left him with a limp, stability issues, very limited use of his right arm and hand and he is non-verbal. He has also lost a lot cognitive function due to the infantile spasms.

Later on, he developed a condition known as PANDAS after a strep infection. Thankfully, we were able to connect with a brilliant doctors who know how to help children with this condition. Through his help, we were able to create a local team to help Luke recover through the use of surgery, antibiotics and infusions.

We continue to support his growth and development through diet and supplementation to this day and know that this path, although hard, has been a gift.

My Health Decline

A few months after the birth of our daughter, I had started to feel quite poorly. I remember telling my husband, Ryan, that I just felt as if I was circling a drain, like the energy was draining out of me.

Shortly after this, I developed weeping eczema all over my body. From my face all the way down to my ankles - I had red swollen , blistery, flaking skin. This became so bad that I would have to shower and change my clothing in the afternoon again, just to get through the day. On top of this, I developed, severe fatigue, muscle and joint pain, insomnia, anxiety and depression - all while having two small children to care for.

The Search

We went to numerous specialists and natural healthcare practitioners. One said it was “this” while another said it was “that.” Some treatments made small improvements in my health but, nothing truly fixed or healed me. This went on for two years. At one point, I became so fatigued that I could not move out of a chair for two weeks. I sat and watched my kids play from the window, wondering how much longer I could go on like this.

After some time, I was able to slow life down enough, get enough help and had found some treatments that helped me get through the day. But, I still felt like a shell of the person I had been.

When I had recovered enough that I was functional, I decided I wanted to start working towards my doctorate in holistic health. Trials have a way of making you do things you hadn’t expected; especially when I felt I still needed more answers. I figured that healing had to be better than just being able to make it through the day.

Growth

After completing my schooling. I started attending seminars with my husband on functional medicine training. I was able to learn from some of the top functional medicine doctors in the country. This included training beyond what my schooling had provided me on topics like: functional lab training, autoimmune disease management, neuro-inflammation, digestive disease, gut healing, mold illness, thyroid disease, hormone health. It was during this time that I also started working with a functional medicine mentors, I spent 3-5 hours each week working one on one with a few mentors on top of doing my own research and studying. This allowed me to see multiple practitioner points of view and also allowed me to grow in my clinical knowledge. During this time, I was also working with one of the practitioners I had really made a connection with. I appreciated her detailed and thorough approach. She has to be one of the most ingenious functional medicine practitioners I know. To this day I still work with her on a weekly basis to keep expanding my skillset and knowledge. She was able to help me work through my own case. We discovered I had an autoimmune disease of the thyroid gland - Hashimoto’s - although there were other issues, this was what had been the source of my extreme fatigue, pain, anxiety/depression, insomnia and weeping eczema. As time went by, I continued to improve. I was no longer JUST making it through my day…I was THRIVING.

Today

I will not tell you that my autoimmune disease is cured. I can only hope that someday we will find a cure for autoimmune disease. But until we do, I live my life with my autoimmune disease in remission. As all autoimmune diseases do, I flare (this means I have an upregulation in symptoms or feel inflamed at times). But, I rarely flare. If I do, I will tend to get a small dime sized rash over my thyroid that lasts a couple of days - but that is it. I no longer live in pain, I sleep well, my hormone levels are where they should be and my skin is rash free. More importantly, my joy for life is back. This is what drives me to do what I do. I love working with people, bringing them out of a hopeless or misunderstood situation. Some people get diagnosed based on one or two of their symptoms. The diagnosis’s are not always wrong, but usually not thorough enough. They haven’t had anyone take their case and look at it as a whole - this can get overwhelming in a complex case. There is a method and skillset that is needed to be able to do this. This is what we do. When you get used to working on complex cases, it makes it really easy to look at a more simple case and know how to help that person as well. My mother loves doing puzzles - I grew up doing them with her. More complex puzzles do require some organization and a method. It’s the same with functional medicine.