While Heterotaxy Connection has a global reach, it is based in the US. November 11th is a day in the US to honor those that have served in the military. Read from the perspective of our military families.
Living the military lifestyle is hard, particularly in recent years.
There are lots of rules to follow, constant changes, and more aspects of life that seem out of control than usual. When Lauren was born, we were stationed on the opposite side of the country from most of our family, and for me, further away from home than I had ever been. In many ways, it felt like we had moved to another country, and the adjustment wasn’t easy. When Lauren was prenatally diagnosed, we had 10 weeks before her birth to figure out how to navigate the medical system and insurance with a medically complex child (which anyone knows can be a nightmare) while also trying to learn about Lauren’s new diagnosis. Sometimes it felt like one of those bad dreams where you are calling out for help, but nobody believes that anything is wrong. Many tears were shed out of sheer frustration. Even after getting approval for Lauren to have a non-military pediatrician who had more experience with medically complex kids, authorities at the hospital still tried to convince me to bring Lauren to the on-post hospital for care. They could not promise a sterile waiting environment, not one doctor there had ever heard of Heterotaxy and they didn’t have any pediatric ICU facilities, but they STILL tried to keep our care on post. After spending her first week of life in the cardiac department of the children’s hospital 2.5 hours away from base, only being home for a month, two life flight helicopter rides, emergency open heart surgery, and several more weeks at the hospital, Tricare (the military’s health insurance system) finally assigned us a case manager. This was the biggest blessing that they could have ever given to us. We have contact with her on a weekly basis when Lauren is in the hospital or approaching a big procedure. When not in the hospital, we connect with her monthly, just to keep her updated. Anybody who has Tricare and a medically complex family member, I HIGHLY recommend requesting a case manager. With her on our side, our Tricare experience has been 90% better than ever. We rarely have to struggle to get referrals approved, and although sometimes getting medication approved has been challenging, we have eventually been able to make that happen as well. By the time we started to get the hang of Tricare, Lauren had two more helicopter rides, two more surgeries, and several more weeks inpatient. We realized that 2.5 hours away was simply too far for us. This was especially true as we learned that the local hospital did not feel comfortable nor appropriately equipped to treat Lauren, and we knew that every ER visit was an almost guaranteed helicopter flight. We decided to apply for two important programs, both of which I also highly recommend. The first being EFMP (Exceptional Family Member Program…I think that’s what it stands for). This helps ensure that we are stationed in a place where Lauren has access to the care she needs. So, there is no possible way that they could move us to some random remote country. The other program is called a compassionate reassignment. Getting the compassionate reassignment approved, I believe, is what has allowed us to help Lauren thrive. By living within short driving distance of the children’s hospital, we have also had access to many other specialists and therapists who are able to collaborate and provide the best care. Unfortunately, the compassionate reassignment only lasts for one year, and we are nearing the end of that year. We are now in the process of re-applying to try to stay where we are. If it doesn’t get approved, then we will have to move again and start all over. This means reestablishing care with a new cardiologist, GI doctor, pulmonologist, orthopedic doctor, ENT, feeding therapist, physical therapist, occupational therapist, dietician and pediatrician. It’s not just a matter of finding all of these doctors either. It’s more complicated than that. They need to be able and willing to collaborate with each other, to know or be willing to learn about Heterotaxy (which a surprising lot are not), to allow us as parents to be part of her medical team, and to know when to call the shots in terms of medical emergencies. It took us about 10 months here to finally feel like Lauren’s medical care team was complete and competent. Once they are all established, we also have to get connected with a new medical supply company, as there are some medical care supplies that Lauren needs on a monthly basis. Additionally, Lauren will need another very big and very complex heart surgery within the next year or so. We are not fond of the idea of her being under the knife in the hands of someone who doesn’t really know her whole story. As you can see, moving in the next couple of months is not in her best interest at all, so our current challenge is to convince the powers that be to keep us here. It is stressful to say the least. All of that said, being a military family with a medically complex child has many benefits. One major benefit is, despite the eternal headache caused by rules and red tape, a very large majority of Lauren’s medical bills have been covered. We would literally be living in a box in an alley somewhere if it weren’t for Tricare. The most important benefit is that the military, in and of itself, is one big family. In fact, the camaraderie between soldiers is probably stronger than family. Throughout this whole journey with Lauren, there have always been others willing to step up and help us out in ways we didn’t even realize we needed help. They have brought us meals, cleaned our house and yard, visited us, helped us move, prayed for us, and willingly carried the weight of Mike’s job when he was not able to be there. Although there are a few other non-military friends who have also helped us in many ways that we will never be able to repay, having our military “family” has helped fill the void that is created by living so far away from our original families.