I’m twelve weeks into an unplanned pregnancy. I always silently cluck my tongue when I hear couples say, “We don’t know how it happened!” Let me tell you, I know exactly how it happened. As a consummate planner, the last few weeks have been surreal. The first time I was truly excited about this baby was ten minutes ago as I watched it swimming contently on the murky screen.

My shirt is pulled up to my chest exposing my stomach. It’s a position I’ve found myself in a few times over the last four years, each time getting more brazen and nonchalant. I grew up in a household where modesty was cherished, and even now, as an adult, find it hard to walk around my house half-clothed, for fear the neighbors might see me. My husband is completely the opposite – comfortable answering the door in his boxers. “They’re shorts, after all,” he reminds me.

The technician spreads cold, blue goo on my stomach with the bottom of her Doppler wand. The screen is fuzzy, like a TV whose antenna is out of alignment. She retraces her movements, clicking pictures and taking measurements. We silently wait for her to finish her task.

My husband, Henry, is sitting at my side switching back and forth from watching the screen and checking email on his Blackberry. He works as a director of finance for a major government subsidized entity, so his days are filled with meetings, emails, and phone calls. There’s never a moment’s rest, even if you’re meeting your third child for the first time.

“I’ll be right back. I need to get the doctor,” the sonographer says.

Having been through two other first-trimester sonograms, one where a doctor was called and one where she wasn’t, I know the procedure. “Is something wrong?” I ask.

“The doctor will be in to explain everything to you,” she says softly. “The only thing I can tell you is it’s the heart. It doesn’t look good.”

My eyes follow her as she leaves the room. “Maybe it’s Chiari,” I say, referring to a condition that runs in Henry’s family. “It affects the heart sometimes.”

Ever astute, he says quietly, “Maybe. It sounds worse than that, though.”

My throat tightens as blood rushes through my veins. Tears manage to find their way down my face and into the crevices of my ears. Henry moves to my side and gently strokes my hair. His large hands wipe tears gently from my cheeks. Those few small gestures are enough to grant me my sanity.

He moves into the hall. He’s calling work, taking the rest of the day off. Snippets of his conversation waft through the door. “There’s something wrong with the baby . . . I’m going to stay with Leighann . . . something with the heart. We don’t know yet . . . we’re waiting for the doctor.” My husband doesn’t take time off work. Ever.

The sonographer and Henry rejoin me. “There aren’t any doctors in the office today. The doctor on call is across the street at the hospital OR. She’s going to talk to you over the phone. I’m so sorry,” she says.

A nurse leads us to the doctor’s empty office. We put the phone on speaker and listen as she says, “I’m really sorry to have to tell you this over the phone. We’re concerned there is something wrong with the fetus’ heart. In situations like this, we send you to a specialist to confirm our sonographer’s suspicions. She sees a lot, but we want you to see someone who looks at abnormalities day in and day out, to make sure she’s right.”

“What are we talking about here?” Henry asks. “Will this baby have a normal life?”

There is a pause on the other end of the line. “We don’t expect the fetus to make it to twenty weeks. With this condition most fetuses die in the first trimester. If it does live, we’ll do a c-section to avoid putting any stress on the heart.”

I suddenly can’t understand a single word being said. I look at Henry and see his mouth moving . . . the doctor’s voice . . . it’s there, too, but it’s all gibberish. I try to gain some sense of understanding, but it’s as if I’m standing at the mouth of a cave, straining to hear voices deep in its caverns. There are echoes and intonations, yet nothing comprehendible. Twenty weeks . . . twenty weeks. It reverberates through my brain like a mantra. Twenty weeks minus twelve. I have eight more weeks with this baby. Eight. More. Weeks. Numb and confused, I close my eyes, shutting out the world around me. I feel Henry’s hand reach out for mine. He curls his fingers around my tightly closed fists and strokes them with his thumb. All I can do is sit and weep puddles on the pretty mahogany desk.

Pregnancy makes your body do funny things. It pulls on muscles you think are strong, and pinches nerves you didn’t know existed. The week after diagnosis, I’m hypersensitive to every stretch, pull, and cramp, wondering if today is the day I’ll have a miscarriage. I can’t feel the baby move yet, so there is no assurance that it’s alive, other than my raging morning sickness, which is really more like all-day sickness. I spend a lot of time in the bathroom, hugging the toilet, and the rest of my time lying down as much as possible to ward off nausea.

I once asked my paternal grandmother what she did while my grandfather was serving in WWII. She said, “I was morning sick.”

“Yes, I know,” I replied. “But what else did you do?”

“Nothing. I was sick all the time,” she said.

I didn’t get it then. Okay, so you were sick. But you just did nothing? I thought. I completely get it now!

The phone rings off the hook, even though Henry swears he told everyone to give us time. I’m still not ready to talk. I need more time to process the nightmare that has become our life. I let the answering machine handle the calls.

Knowing I can’t ignore them forever, I start talking to family on the third day. I find myself repeating the same phrases. “This baby won’t have to know pain. There are worse things in the world. Think of all the moms in Haiti who can’t feed their children tonight and are watching them die a slow death by starvation.” Thoughts like these help me distance myself from the reality that my baby is dying and there’s nothing I can do.

Henry takes on the role of informer, shielding me from having to tell most people what is going on. He answers the phone, unless I step in to do it myself. I realize I’m holding the girls tighter, cuddling with them at night and rocking my two-year-old in the middle of the day, since I’m not sure when I’ll be able to rock another little body. I cry into her back, or hair, so she doesn’t see. I tell everyone and myself I’ll be fine. I verbalize that while I believe God can heal, I don’t want to assume that’s what He’ll do in our case. The reality is people get sick. People die. Miracles are hard to come by.

I learned this lesson while a junior in high school. My sister, Amy, who’s younger than me by twenty-one months, had a friend who was battling bone cancer. Muriel must have spent several years in the hospital, in and out with different chemo treatments. She was in remission a couple times. I remember her coming to our house wearing a wig. It looked great, but you could still tell it was a wig. Then we found out she had another tumor in her hip. The doctors suggested amputation at the waist. She’d be strapped to a chair to sit up for the rest of her life since they’d have to amputate so high. She refused the surgery. She was fourteen. She’d seen too many of her friends (they were her friends now that she’d been in the hospital so long) get body parts amputated, trying to cheat death, only to have another and then another part removed. She didn’t want that life.

I prayed for her healing every night. I begged God, literally crying for her life. She died.

I don’t know that I got mad at God for letting her die. However, I did question why He let her die. I never got an answer. Oswald Chambers, an early twentieth-century Christian teacher and writer, once said, “God doesn’t reveal to us what He is doing, but who He is.” God is good. That doesn’t mean He doesn’t allow bad. I’ve experienced both. There’s nothing easy about realizing God isn’t Santa Claus.

I once again find myself on my face, before the Almighty. This time, my tears are not watering a garden of hope, but one of grief. My heartfelt pleas are not for healing. They are for a quick end. The days are so tedious and heavy; I’m not sure how many of them I can live through. They stack up like bricks on my back and I’m afraid that one day, they will literally crush me. I pray for the load to be lifted, to be taken away.

It’s incredibly selfish, I know. I want it all to be over for my sake, for the sake of getting on with things. The longer I’m held up by this child who won’t live, the longer it’ll be before I can begin again.

It’s here where the Creator of the universe tells me He won’t take my load. He refuses to do things my way. He doesn’t tell me in an audible Burning Bush sort of way, but it’s just as effective. And, just like Moses, I’m not sure I’m the right one for the job.

I’m doing a Bible study on The Fruit of the Spirit (love, joy, peace, patience). It turns out the focus of this week is faith. In the text, the author asks, “What are you not trusting God will do because you are afraid of disappointment?”

Seriously? Hoping for healing and not getting it is the biggest disappointment I can think of. Why don’t you believe I will heal your baby? The thought flitters across my mind, out-of-place, like a butterfly through a burned-out forest. It’s so the opposite of everything I’ve believed the last few days, that I sob uncontrollably. My brain pulsates with the thought, like it has sprouted its own heart, and has a sinus rhythm all its own. Is it possible that God will heal this child?

I decide I’ll no longer walk around on pins and needles waiting for this baby to die, no longer pray for a quick ending to the pregnancy. I’ll trust that healing will take place. What that healing looks like, I don’t know. But what I do believe is that we’ll meet this baby; we’ll hold it in our arms. I’ll celebrate my baby’s life until it’s taken from me. Instead of living with the fear of death, I’ll live every day nurturing this life inside me.

(selected excerpts above from
 Showing Heart: The True Story of How One Boy Defied the Odds)

At 22 weeks into the pregnancy, we consulted with a pediatric cardiologist to formulate a treatment plan. Although Ryan’s odds were very slim, we are grateful to this cardiologist who convinced a team of renowned surgeons to give him a chance.

Early on a February morning in 2009, Ryan was born via c-section at our local pediatric hospital amidst two teams of operating room personnel adding up to over 30 people. Another team consisting of critical care doctors and plastic surgeons stood waiting in an adjoining operating room to cover his exposed heart to protect him from infection – the leading cause of deaths in ectopia cordis patients.

It took the critical care team 15 minutes to stabilize him and make him comfortable on a ventilator. Beyond the unbelievable news that Ryan survived birth is the fact that his tiny heart was covered by a thin membrane divinely protecting it from outside germs.

The bad news was that doctors confirmed Ryan’s right ventricle was underdeveloped and doesn’t work (Hypoplastic Right Heart Syndrome – HRHS) in addition to several other heart defects.

This was our greatest fear. In our pre-birth consultations we were advised that the chances of survival for an ectopia cordis baby are very slim (roughly 10%), but that the chances of survival for an ectopia cordis baby with the addition of heart disease is nil. As in, there’s never been a survivor.

Ryan is the first survivor of this combination of defects!

Ryan continued to grow in the hospital where his team worked for 11 months to get him stable enough to come home. In that time, he survived multiple procedures and surgeries to get his heart re-wired enough to come home and his lungs stable enough to breathe without the assistance of a machine.

Today, Ryan is a thriving preschooler who loves Teenage Mutant Ninja Turtles and superheroes. His health didn’t come easily. We lugged around medical equipment the first year he was home and have spent countless hours with occupational, speech (for feeding) and physical therapists. But his spirit is priceless. His smile can light up the darkest day. People who meet him and know nothing of his story remark on what infectious joy he brings.

Our story is one of hardship, but one of hope. We are beyond grateful to the medical staff and beyond grateful to God.

Leighann Marquiss is the author of Showing Heart: The True Story of How One Boy Defied the Odds, You Are Not Alone: An Insider’s Guide to Facing Prenatal Diagnosis, and the devotional Looking Toward the Cross (all available on Amazon ). She blogs frequently at www.leighannmarquiss.com where she writes openly about brokenness, living with special needs, family and marriage topics, with a little bit of fun thrown in for good measure. She and her husband, Henry, have four young children and live in Pittsburgh, Pennsylvania. Please stop by and check her out.

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