IVF and adoption put me into debt, but that was nothing compared to the costs of treating my daughter's illness.

By Leah Campbell
February 17, 2021
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My dreams for my future have changed a thousand times since I was a kid. I wanted to be a dolphin trainer, a pediatric oncologist, a writer, an actress. I hoped for a big family, or an amazing partner, or maybe no partner at all—living free and single as I tend to do best. The only thing that has ever remained consistent about what I’ve wanted out of life? It was my desire to be a mother. So of course it was devastating to be told at the age of 25 that I might never be able to have kids.

I was diagnosed with stage IV endometriosis shortly after donating my eggs to two different infertile couples. Doctors familiar with my case believe it was the hormones involved in my donations that caused my condition to become as aggressive as it did. But the cause never really mattered as much as the result; by the time I was 27, my ability to conceive on my own had become an impossibility, and my doctors were telling me that if I ever hoped to get pregnant at all, I would need to take drastic measures right away.

I went through two rounds of IVF that year, once in July and once in November. There were no reproductive endocrinologists in my state (Alaska) at the time, so I had to travel to Seattle for those treatments. The cost of IVF was steep: $30,000 in total, for which I took out an immense IVF loan—luckily most fertility companies offer financing options. But I reasoned it would be worth it in the end—after all, being a mother was the only thing I’d ever really wanted. And people financed more on cars and student loans every day, right? Certainly a child was worth the same monetary strain.

Unfortunately, no child was produced. Both my IVF rounds failed, and at 27 years old I was left broke and brokenhearted. It took me a few years to recover from that devastation and come to terms with the fact that I would likely never carry a baby. But shortly before my 30th birthday, as I slowly began to dig my way out from under that debt I’d accumulated, my heart opened up to the idea of foster care.

I decided I wanted to foster teenagers, to provide a home to kids most in need of that love and support. Life had different plans, though. A week before completing my foster certification, I met a woman by chance who was due to give birth to a baby girl in one week’s time. When she heard I was getting foster certified, she asked me to take her baby.

Just like that.

It seemed impossible at first; adoptions don’t just fall into people’s laps. But in my case, that was exactly what happened. Four months later, and approximately $12,000 in legal fees (which my family members helped me pay for until the adoption care tax credit came through from the government), my daughter was given my last name.

Becoming a mother was everything I had hoped it would be. My little girl is the love of my life, and even those first few sleepless months were blissful. There is no role I cherish more than being Mom—to the daughter I didn’t even know to hope for.

But around her fourth birthday, she started complaining about pain. This wasn’t just the random childhood ache—her pain was severe enough to keep her from walking up stairs. It would often leave her crumpled on the floor in tears. And it landed us in emergency rooms and with specialists ordering invasive tests over the course of the next four months, always in search of an answer that seemed just out of reach.

Eventually, my daughter was diagnosed with a rare autoimmune condition called Juvenile Idiopathic Arthritis (JIA). Her immune system had been attacking and destroying her joints. The treatment prescribed was immunosuppressant therapy; a chemo med she would be injected with every week.

We’re about four years into her diagnosis now, and just recently, a new medication was added to her protocol to keep her disease in check. The bills are endless, peaking that first year of her diagnosis at about $60,000 over the course of one year, as a result of all the specialists and tests. Her new medication, I’m told, is especially expensive.

Luckily, I don’t have to pay those bills. My daughter is Alaska Native, and as such, she is provided health care for free through Indian Health Services (IHS). Since there are no pediatric rheumatologists in Alaska, IHS pays for her to see the team at Seattle Children’s hospital. All her medications and tests are covered as well.

I have her under my insurance because I can afford to do so, and they pick up the initial round of bills—which is the only reason I’m privy to just how much her care costs. But after my insurance covers their part, everything else goes to IHS. I’m not responsible for anything from there.

I know how lucky that makes me.

The JIA community is a tight one, and I’ve formed friendships with many families in that community over the years. I know parents who have gone bankrupt paying for their children’s care, and parents who have lost jobs simply because of how many doctor's appointments they have to attend.

Until you’ve cared for a child with a chronic health condition, you can’t fully understand the toll that takes—mentally, physically, financially. We do it because we love our kids and we’re willing to fight for them to have the best life possible, but it shouldn’t be so hard. It should never be so hard.

I’ve come to believe my daughter and I were meant to find each other. She is my missing piece, and she fills my heart with joy every day. Every cent I spent and tear I shed in the path to finding her was worth it, to me, because I got to be her mom. And I’d like to think that having me as her advocate in the navigation of this disease has helped my daughter have better potential outcomes as well. That maybe I was her missing puzzle piece, too.

But caring for her has also taught me how devastatingly expensive it is to have a child with a chronic health condition. And my own costly path to motherhood, followed by these past four years of advocating for my daughter's care, has shown me how broken our health care system truly is.

People shouldn’t be bankrupted by medical needs. They shouldn’t have to choose between caring for their child or keeping a roof over their heads. And the only reason my daughter will be protected from that same future is because of her native status. But every child, every family, should have that same access to affordable care in times of need.

Without that care, my daughter’s life would be debilitating, marred by constant pain. It’s a future I don’t even like to think about as possible for her. But it’s one far too many families have to face when they can’t afford the care their children deserve.