StoriesJan 10, 2019

Mary Cogan Holleran: A Person, not a Diagnosis

After Liam was born, he became a real person and not a diagnosis.

As many people reading this know, finding out something is wrong with your baby in pregnancy is like being plucked off land and dropped in the middle of the Atlantic Ocean. No boat, no life vest, no sense of direction. You just try not to panic so you can float. Time passes slowly. At times you are so sad, you just feel like you are drifting aimlessly. Then other times, you are so scared it’s like every direction you turn, sharks are circling your dangling feet. And then there are the hopeful moments when you feel strong enough to keep swimming.

This is how I felt after October 16, 2015, 18 weeks pregnant with our first baby, when we learned he had spina bifida.

So many pervasive questions and paralyzingly thoughts from various points of view kept loitering in my head. Did I cause this? Will I be able to keep working? Will we have enough money if I can’t work?

Am I capable of mothering a kid with special needs?

Could my marriage survive having this child? Could my marriage survive not having this child? Would this child forgive me for making him this way? Would he be happy and have a fulfilling life?

I didn’t even know where to begin processing all of these questions. I had no perspective on any of it.

Then, we were given the option for fetal surgery.  We briefly weighed the risks and benefits.

Risks included chance of uterine rupture and prematurity, and potentially no more children.  Benefits were high likelihood of not requiring a shunt and potentially the difference between walking and not walking.

Despite the possibility of devastating complications, I felt like I could help him after feeling like I’d failed him so badly already.

We were also in a good place in our lives to do it. We had no other kids to care for, my job would be safe, and we had help. So we were in.

We rented an apartment 250 miles away from home, near the hospital where the surgery would be, and where I’d have to stay for the first month postoperatively. We moved out of our home in the city and into a rental near my in laws in the suburbs so we’d have help while I was on bed rest for the rest of my pregnancy.

And then, as unexpectedly as getting a Spina Bifida diagnosis in the first place, the doctor doing one last ultrasound hours before surgery saw that my placenta had grown around the front wall of my uterus. This meant there was nowhere to safely cut in to my uterus.

Surgery was off and we just went home.

I remember my mother and sister admitting they were relieved when it was canceled.  I remember sitting on my couch for two weeks, feeling like I had just failed my unborn child and my husband…for the second time. I couldn’t wrap my head around it. Fetal surgery was my life jacket in the middle of the ocean. To that date, it was how I coped with the diagnosis. When it was taken off the table, I had to reprocess it all. I had to let go of thinking I could control some of it, and just wait and pray and hope for the best. And as many women experiencing this sort of pregnancy know, this is the very hardest part.

A friend very recently told me about a conversation she had with her husband about perspective. They agreed that if you are open to finding it, it is all around you.  It might not have been until Christmas Eve when I gained some healthy perspective again. I remember having friends over and telling them a little about what we were going through. Then I realized I was telling friends who were having a difficult time conceiving a child at all. We didn’t talk about it, but I got the sense that, if roles were reversed, they would be telling the story differently. There would be a different sense of gratitude from them.

Our son, Liam Edward, was born on March 15, 2016. He wound up not needing a shunt, which I once told myself was the main reason for doing fetal surgery. He doesn’t use his legs, and I will never know if surgery would’ve changed that.

But, oddly enough, after Liam was born, I never really thought about the “what if’s” of fetal surgery again. Liam became a real person and not a diagnosis with open-ended potential complications. Liam is who he is. And if I ever thought I had real control over that, it was a false sense of security.

He was going to be funny and sweet and obsessed with my iPhone either way. He was going to have incredibly long eye lashes and the most endearing smile regardless. He loves Elmo and puppies, and mac and cheese, and throws toddler temper tantrums as well as any other toddler. And he is a loving big brother, which would not have been possible so soon if we had surgery! These are all things I couldn’t see while I was pregnant. But perspective is a point of view based on knowledge, beliefs, and personal opinions. I couldn’t have had perspective on who Liam would be yet. I wish I could have. I wish my life jacket was knowing I’d have a beautiful son who was loved to the ends of the earth, and who made many lives better by being in them, instead of a surgery that might  fix something.

Don’t get me wrong. If we landed in this situation for a second time, I am pretty sure we would explore fetal surgery again. But I would also have perspective enough to know that that child would not be defined by the outcome. He would be who was going to be all along. And I’ll have succeeded just by being his mom.


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