An Undiagnosed Disease and Our Path to Surrogacy

“The path that brought me to surrogacy involves a long journey with an undiagnosed disease”

I have struggled with health issues for most of my life, and if I’m being honest, I don’t think I ever really believed I would be able to carry a child. Throughout my late childhood and early teenage years, I began to experience progressive autonomic nervous system dysfunction. My symptoms initially included low blood pressure, high heart rate, inability to sweat, and exercise intolerance. I could still participate in gymnastics during middle school and horizontal jumps in track and field during high school and my early college years. However, as college progressed, my symptoms expanded to include widespread pain, muscle burning and fatigue, shortness of breath, and chronic diarrhea. Whereas I was once a state champion and Nike National All-American in the triple jump, by the time I started my PhD program, my symptoms were debilitating and it became a struggle to walk up the stairs.

I searched aggressively for answers, wanting to understand the cause of my disease in case there was something I could do to stop its progression. I also needed answers to plan for my and my husband’s family. Could I ever become pregnant, and if I did give birth, would I give my child the same disease?

After over 150 medical appointments, I learned about what might be contributing to my symptoms.

But, while my appointments and test results yielded promising leads, the underlying cause remained elusive. For all intents and purposes, I was undiagnosed, which meant that information on pregnancy outcomes was somewhat limited.

About one year before the COVID pandemic hit, my husband and I had a series of consults with my medical team and a high-risk OB. It seemed everyone had a different opinion about a potential pregnancy, though they all agreed on the biggest concern—whether my orthostatic hypotension would be manageable. Taking medical advice and our understanding of my body into consideration, my husband and I ultimately decided that pregnancy was not something we could reasonably pursue. My medications aren’t cleared for pregnancy, and my cardiovascular system would most likely not efficiently cope with added stress, even with pharmaceutical support. In short, there were too many risks and not enough information. We had no way of knowing if or how our baby would be impacted, or whether any changes would be permanent. All of these risks and unknowns seemed too great to overcome.

When I write all of this out, it sounds like the decision to pursue surrogacy was easy for us.

For my husband, at least, the decision was clear. But I spent over a year thinking about whether it was the right choice. Was I really sick enough to need a gestational carrier? Most days, my answer was “yes,” but on the days I felt healthier, I spiraled into a place of doubt and guilt. I was also unresolved about whether it was ethical to ask someone else to risk their own body to carry our child when I was not willing to. I had a lot of fear about the worst-case scenario and what it would feel like if someone else suffered because of my choices. I also needed to come to terms with the fact that I wouldn’t be carrying my baby and accept that parts of my life were being taken away by a disease I couldn’t even put a name to.

I wish I could say that I came to a profound realization that enabled me to take the first step of signing with an agency, but this didn’t happen. I worked up the courage to embrace this path in incremental steps. It involved taking time to mourn the loss of a pregnancy experience, being honest with myself and husband about my feelings, and talking with other women who did surrogacy or infertility treatments.

“I’ve found that some of the greatest inspiration can come from others who have embarked on the same journey.”

When the COVID pandemic hit full force, my husband and I scheduled our first infertility consultation to learn about the IVF process. It was the perfect time to cycle because I was working temporarily from home and could be bed-bound during IVF stimulations. Initially, our doctor was extremely optimistic. I was 28 years old with no history of an inability to conceive, and my husband was 30 with excellent sperm quality. Still, I needed to do AMH and cycle day 3 testing before receiving a final verdict.

When I received my fertility workup results, I realized there was an obvious problem. My AMH was dramatically reduced and my antral follicle counts were abysmal, especially in my right ovary. At our follow-up consult, our doctor went from thinking we would get many embryos to advising us that we had a reduced chance of achieving a live birth. Receiving the diagnosis of severe DOR (Diminished Ovarian Reserve) was unlike any diagnosis I had received before; it was devastating, and lonely. All these years I’ve been sick with no concrete answers, and now it was possible that my disease was destroying my chance of having a biological child. Whether fair or not, I felt angry at all the doctors I had seen who couldn’t do anything to help me. Some of them didn’t even listen to my concerns, and now it might be too late to have a successful IVF round.

“The one silver lining of my DOR diagnosis is that it helped me come to terms with our need for a surrogate…”

Before I go on, I must note that there are many causes of DOR that aren’t related to a person’s competence to carry a pregnancy. In fact, many women with DOR go on to carry healthy pregnancies, either with their own eggs or through donor conception. However, our doctor thought that my DOR was likely a direct result of my chronic health issues on my reproductive tract. In my mind, severe DOR meant that my own body knew it was too sick to carry a child, and for a person who was doubting whether she was sick enough to need a gestational carrier, this provided some psychological closure.

For our first IVF cycle, we stimulated aggressively. When everything was said and done, we got two fertilized eggs, thanks to some healthy follicles in my left ovary.

After further testing, beyond everyone’s expectations, the embryo came back a euploid female.

Our first IVF cycle was one of the most emotionally intense and momentous experiences of my life. There were many unexpected personal changes that altered how I viewed surrogacy and the path that brought me to it. For one, I truly didn’t expect to be as emotionally attached to our blastocyst as I was. She was our first embryo and our first daughter, and my feelings about her transformed my understanding of love. I felt an absolute obligation to protect her and give her the greatest chance at a healthy life. Given all the concerns we had about the safety of my body, I felt much more resolved about the decision to transfer her into a healthy carrier than I did before IVF.

Coincident with these feelings of love was the realization that accepting her completely would mean accepting more aspects of myself. When we were naïve and presumed we knew how we would feel about our embryos once we had them, my husband and I discussed transferring any males we might have first, because more than 80% of patients with dysautonomia and autoimmune disease are female. But once we got our first female embryo, I realized how absolutely absurd it was to think that I might not have chosen to transfer her because she might turn out like me. Of course I would choose her, even if I knew she would be like me, because she’s perfect and has an enormous amount to give to the world. Once I fully embraced this mentality, it became somewhat easier to come to terms with my health issues and with surrogacy. Because I looked at my daughter through the lens of love and acceptance, I looked at myself with more love and acceptance, too.

About 8 months later, our gestational carrier became pregnant with our euploid female.

Our carrier is now 25 weeks pregnant and the baby has passed all of her anatomy scans. There are still days when I find myself overwhelmed with anxiety and guilt, but overall, I’m astonished by the grace, maturity, and strength of our amazing carrier, who is lovingly protecting our little girl.

I want to leave you with the following personal affirmations, which I recall when I find myself struggling to come to terms with aspects of this process.

First, all you can do in life is make the best possible decisions with the information you have available to you.

At the start of this journey, all available information indicated that gestational surrogacy was the safest path for us. None of us can control the outcome of our surrogacy journeys, but we can feel confident that we went into them with the right intentions.

Second, you are doing everything you can to give your child the best possible chance at a healthy start to life, and that is true whether or not surrogacy was your first, second, third, or final choice.

You went through a huge, emotionally and physically arduous process to create your child and you partnered with an amazing carrier who passed their health screenings. Your child will always know how much you wanted them and how hard you fought for them.

Finally, I will say this: if you are considering gestational surrogacy and wondering whether you are strong enough to proceed because you might (and might already) feel overwhelmed by sadness, guilt, or anger, take a moment to think about all the things you’ve been through.

About a year into considering surrogacy, I called my dad and told him I didn’t know whether I was strong enough to pursue it. I was still struggling with the enormous guilt and the mental back-and-forth that maybe, just maybe, I could actually carry a pregnancy to term. I was tormented by the lack of closure about my diagnosis and my daily health struggles. My dad responded, “you are strong enough to do anything. Of course you can do this—if you decide you want to.” He was right. I have hauled myself out of bed every day for the last 10+ years with bravery and resiliency even when, and especially when, I felt like I was dying. I have been a loving wife, daughter, and friend. An accomplished athlete and a PhD. Yes, I could pull myself together and proceed with gestational surrogacy if I wanted to. I can do almost anything I set my mind to, and so can you.

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