“Steve… Lisa… I’m going to get the doctor to take a look at this.”

I laid there with goop on my belly, staring at the screen. What the hell was she looking at? I didn’t see much but a few dark spots and what I could tell was my baby’s head. Steve and I didn't know what to think. As we waited… the thoughts started to emerge. You know, those thoughts when you feel it in your bones that your whole world is going to be turned upside down, every which way. Those thoughts where you're not sure what to do... punch something, or cry. Yeah, those thoughts. 

The doctor came into the room, sat down to look at the ultrasound images, and without much hesitation, she began to explain to us what she was looking at. We were indeed having a boy, but there was a problem. A problem I thought?

No, I am going to have a healthy baby because that’s just what is supposed to happen, right?

I mean, I couldn't imagine it being any other way. She showed us where his stomach was and that it was sitting next to his heart and lungs. Looking at the screen, my little baby all cozy and comfortable, I couldn’t quite comprehend what was happening.

We were both in shock and all we could do was sit there and stare at the screen.

 Lisa, Alexandra, Steve - Circa 2007

Lisa, Alexandra, Steve - Circa 2007

His stomach should not be sitting there, so what happened? She showed us where the hole was in his diaphragm, which is how the stomach was able to migrate too far ‘north’. The potential for other organs to do the same throughout the pregnancy was very high. Finding the hole this early was a sure sign that development would not progress well. She continued to explain that the diaphragm did not develop correctly, very early in the pregnancy, and was just “something that happened”.

She assured us that it was nothing we did, and more specifically, nothing that I did... but at that time, I wasn't so sure. How could “something just happen” I thought? “Something” is a very broad word and could mean a million different things, and my mind quickly scanned the past few months… nothing that I could think of right then. There was nothing… so we continued on. The stomach was the first organ to get through the hole, but other organs would follow throughout the pregnancy. This would make development of the heart and lungs nearly impossible. 

What the hell was going on here? What was I hearing? My mind was a flurry of thoughts and emotions and I could barely keep it together. All the visions, dreams, goals… everything I had in my mind of how life was going to be, was completely and utterly smashed to pieces. In this very moment, hearing the doctor speak of the health issues our baby had, realizing the future life of our sweet baby boy was dismal, I knew my life, my family's life would never be the same. 

It was all kind of a blur, but, when all was said and done, we were told the news that our son, our sweet baby, had a birth defect and his prognosis to making it until birth was slim, and the chance of him being born and living even a few short minutes, or hours, was a long shot.


I absolutely could not imagine the thought of not having a healthy baby boy.
What? Are you kidding me? This has got to be a mistake.
There is no way I can make it through a pregnancy knowing my baby, most likely, will not live.
This is not real right now. 


We left the office in complete shock and couldn’t quite get a handle on what this all meant. The days immediately following this news were a whirlwind of emotions. Everyone knew we were going to the first ultrasound appointment to find out the gender of our baby. We had to tell people, but how were we going to tell them this news? How were we going to tell them that the baby we were so excited to bring into our lives had a slim to none chance of surviving? How were we going to tell our 5 1/2 year old daughter that the little brother she had so desperately wanted, she was most likely not going to have here on this Earth? The emotions were almost too much to bare, and we cried, and cried, and cried more with the realization that hit us like a ton of bricks. 

Within a mere 24 hours, we have went from elation to desperation. I had never in my life experienced anything this painful, and had no idea what was going to happen... no idea how to navigate through this... and absolutely no idea the pain that was still ahead.

My journey with infant loss began with this first ultrasound in December of 2002
and my life would never be the same.

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Our sweet boy had what is called a Congenital Diaphragmatic Hernia. A Congenital diaphragmatic hernia (CDH) occurs when the diaphragm muscle — the muscle that separates the chest from the abdomen — fails to close during prenatal development, and the contents from the abdomen (stomach, intestines and/or liver) migrate into the chest through this hole. About 1,600 babies are born with CDH every year in the U.S., or 1 in every 2,500 live births.

When the abdominal organs are in the chest, there is limited room for the lungs to grow. This prevents the lungs from developing normally, resulting in pulmonary hypoplasia (or underdeveloped lungs).

Over the next six months we would be inundated with medical terminology that would make a normal person’s head explode, but would become all too normal for us.

When I was 26, I had my daughter, Alexandra.

It was one of the most joyful times in my life to date. I had decided not to stay with her father, and that was a decision I was comfortable with, but I also knew that it meant I would be raising her alone. I had needed to make some changes in my life, and I decided now was the time. I went back to school to complete my teaching degree, and I was on welfare so that we could have the necessities we needed.

It was a rough time because this was not how I expected my life to be at 26 years of age. Even though my current situation looked bleak, I knew in my heart that I was going to create the best life for her and that I would do whatever it took to make sure she was loved, nurtured, and well taken care of. My best friend, and my best friend to this day, Ivonna, was with me every step of the way. She was my birth coach and was by my side for Alex’s birth, and helped care for her in the days, weeks, and months that followed.

Life began to settle and my routine of school, coaching (I was a varsity volleyball coach at the time), work and caring for Alex, became my new normal. It’s now October, and Alex is approaching nine months old when my life was turned upside down, in a wonderful way.

 Alexandra Marie - Circa 2002

Alexandra Marie - Circa 2002

On October 15, 1997 I met my future husband.

I met Steve and we hit it off almost instantly. Within a few weeks, we had set a time and place to meet in person. We met for dinner, I brought Alex, and the rest, as they say, is history. We were inseparable and began a two year relationship that led to our marriage on October 15, 1999. The family I dreamed of had become a reality and I couldn’t have been happier. 

Again, life began to settle in. We didn’t talk about children right away, but knew we wanted to have a child together. We agreed to giving this one shot as we both thought two children were ‘enough’, and we didn’t want to have children to much later in life. 

We found out we were pregnant in early September. All excitement broke loose and we were now beginning our journey into “two children” zone.

A place I wasn’t quite sure I would ever ‘go’ before I met Steve, but none-the-less, here we were, and we were ecstatic. Alex was five years old and was elated to be having a sibling… and so desperately wanted a little brother. We started making plans and envisioning our future as a family of four. It was my second year teaching and I had finally arrived… doing something that I love, a husband, daughter, and another child on the way.

We told everyone right away and it started to feel pretty darn good to be pregnant again (although I was not one of those women who enjoyed being pregnant!), knowing that our little family was going to be complete. All was right in my world, and the first few months flew by. It was time for our first ultrasound where we were going to find out the gender of our baby.

The idea that there could be something wrong with my baby had
never entered my mind, not even on my radar.
Having a healthy baby was normal, right? Or so I thought.
We would soon come to realize, all too well, that having a healthy baby is a miracle. 


 

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