It Happened to Us

January 17, 2014

SS Jan PostJanuary is Birth Defects Awareness month, so I would be remiss if I did not dedicate this post to my beloved son, Marco. After all, he is the reason that I found Still Standing in the first place.

My first job out of college was as a nurse in the NICU at George Washington University Hospital in DC. I was only 21 years old. I took care of premature and sick babies 36 hours a week. I did it for 11 months before I decided that I couldn’t do it anymore. It was too hard. The stakes were too high. I was always worried and anxious that I would make a mistake that would cause a fatal complication with a baby. I saw babies thrive and live and leave the NICU, and I saw babies lose their battle. It was a very challenging, yet very rewarding job.

Never, ever in my wildest dreams did I think that I would be a parent to a baby in the NICU, and one for which there were no answers. Never did I think I would be wheeled into the NICU on a stretcher because my newborn baby didn’t have enough time to wait for me to recover enough to be transitioned to a wheelchair. Never did I think that I would be the parent to have to tell a team of doctors that we would make the impossible choice to withdraw care.

How did all of this happen? To us? How did we end up here? These are questions that will haunt me for the rest of my life.

It all started at my anatomy scan in June of 2009. It was my first pregnancy. I was naive. I was excited. My biggest worry was figuring out how we were going to afford the astronomical cost of daycare in our area.

I was 18 weeks pregnant with Marco. I remember laying on the table watching my OB perform the sonogram, holding my husband’s hand. It all felt surreal. Seeing my baby up there on that screen. It was incredible. We weren’t going to find out the sex, so really to me, the appointment was just about getting a chance to see the baby. I don’t even remember worrying about whether or not the baby would be healthy. I almost hate to admit it, but despite all that I saw in 11 months of work in the NICU, if I’m being totally honest, I guess that the thought never even crossed my mind that the baby wouldn’t be healthy. How silly I was to assume I was immune. How did I think that any of those things that I saw in the NICU during those 11 months, years ago, couldn’t happen so us?

“It’s not so much what I see, it’s what I don’t see”. That was how my OB phrased it after the sonogram. Everything looked fine with the baby, except that she couldn’t find a stomach. She didn’t seem particularly concerned and reassured us that it was probably nothing. She chalked it up to “timing” – that maybe he hadn’t swallowed any amniotic fluid in a period of time, and therefore his stomach wasn’t expanded. She said that we would do another scan in 4 weeks to make sure that all looked good, and sent us on our merry way. And merry we were. We still weren’t worried about anything happening at that point. I feel like I had heard countless stories of pregnant women being told that something looked abnormal on sonogram only to spend their entire pregnancy worried for nothing, as the baby ultimately would end up healthy. No way. I wasn’t going to be one of those worried expectant mothers. I was going to assume the best and think positive. I was so naive.

The next 4 weeks I focused on interviewing daycares and enjoying my summer. When we returned for our repeat sonogram, we faced less reassuring news. I believe she did see a small stomach on sono, but the baby wasn’t growing appropriately. She set up an appointment for me the next day with a perinatologist. I remember looking at the referral slip she gave me that night before that fateful appointment where it would all hit the fan. It said “IUGR”. I Googled it. Sure, I knew what it stood for. I knew it meant the baby was small, but I wanted to know more. What did it really mean? The bottom line I took away from my internet search was that it could be due to placental issues – baby not getting enough nutrition, or it could be due to a genetic or chromosomal disorder. That was the first time my stomach sank. I could only hope that it was placental insufficiency….but deep down in my gut, I had a feeling that something was really wrong with my sweet baby.

My suspicion was right. We found out the next day that our baby had “multiple anomalies”. There were many things wrong with him. We were scared and sad. Lost. Devastated. I have never cried so hard and loud as I did that day when I left the doctor’s office and got in my car to call my mom. My husband and I clung onto hope as if hanging on for our lives. We knew that Marco would certainly have special needs, but we were hoping that he would have some quality of life. The following 7 weeks were a barrage of tests. Amniocentesis, sonograms, MRI, echocardiogram…you name it, they did it. After the chromosomal analysis came back completely normal, we met with 2 different genetics specialists. No answers. No one could figure out what he had that was causing the anomalies.

After 2 weeks on bed rest, at 29 weeks 4 days, on October 6, 2009, Marco was born. He was 1 lb 10 oz. The trumping factor was that Marco’s jaw was locked, and they couldn’t secure a sustainable airway. We essentially had no choice but to let our boy go, just hours after he was born. When I really take myself back to the events of that day, I wonder how my husband and I actually survived it. How did we survive seeing our precious, fragile baby being resuscitated? How did we survive watching them remove the tubes and wires that were keeping him alive from his body? How did we survive holding his lifeless body knowing that we would be saying goodbye to him for the last time only a few short hours after his life began?

Love saved us. Although a birth defect stole Marco’s life, it did not define him. He was our son. We loved him with all our hearts and we were prepared to fight for him, even if that meant having to let him go. The love that we had for each other and for Marco carried us through the darkness. It conquered the rare/unknown genetic condition that robbed us of ever getting to parent Marco like we had imagined we would. It gave us the strength to try again for another baby, for Lucia. Though traveling this road has been extremely difficult, it has taught us so much. It is with love that I say I would rather have Marco as I do now, then to never have had him at all.

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