It’s been 8 months. In the last few days, I haven’t thought about it. It’s relieving. And I feel guilty. Eight months ago, my world turned completely upside down and has been since. Nothing will ever be the same.
Expected & Unexpected
Hello! My name is Burk. It sounds like an intro to a support group. Because to me, it is. You, the reader, my audience, this is my support group. Writing has always had a healing effect on me. But this, even writing can’t heal.
Where was I? My name is Burk. I am a full-time linguist, a part-time content creator, and a passionate writer. But most importantly, I am a father. I have never written about this before. It’s time.
Last year, my wife and I were happily expecting a child. I have three boys. I had hoped for a daughter this time. The next doctor’s appointment was just around the corner and we were excited to learn the sex of the baby. Then everything changed.
Really Nothing Prepares You for That
“It’s a girl. But… something is not quite right with her heart” — the gynecologist said. I had always loved the doctor’s appointments before. Seeing my little one on the screen. I have three boys. I’m used to these appointments. But not this one.
Nothing prepares you for that nervous look on a doctor’s face. Not quite right with her heart. The gynecologist sent us to a specialist in the next city. Waiting for that appointment was hard. Unbearable.
At this next appointment, the doctor did an ultrasonic. The longest one we had to ever endure. 30 minutes. 40 minutes. Two other doctors came in and took a look. Then they told us their preliminary diagnosis: Our little baby had a congenital diaphragmatic hernia.
The heart wasn’t the only thing that was “not quite right”. The diaphragmatic hernia affected multiple organs: liver, lung, heart, and intestine. A rare condition. The cause unknown. A treatment… barely existent.
In essence, the diaphragmatic hernia caused her internal organs to be… in the wrong place. All of them. Unimaginable. My wife cried. I cried.
We felt numb on our way home. Our minds not able to comprehend what we had just heard.
There was one straw of hope left. The doctor — a wonderful woman by the way — told us that a small percentage of babies born with this condition survived after birth. It all depended on the next months, on the process our little one would make.
My wife and I didn’t want to leave anything unattempted. We made an appointment with a special clinic for this rare condition. 7 hours away from home. My wife went alone. I stayed home with the kids. To keep everything… normal. As normal as possible for them.
At this special clinic, the doctors explained to my wife that our chances were low. At around 20%. With a unique procedure, this chance could go up to about 50%. Or stay at 20%.
Even with misplaced organs in general, the baby had the chance to survive and thrive. But in our case, the lung was the problem. The lung — between liver and heart — lacked sufficient room to grow properly. The baby wouldn’t be able to breathe after birth. Unless the lung developed further in the last few months of pregnancy. This is where the procedure came in: A tiny balloon was going to be inserted into the lung, to increase its volume. A procedure that — if successful — could be enough for birth. And assisted breathing afterward. Eventually leading to a fully functional lung. Under ideal circumstances. We had hope.
The Weeks Leading up to Birth
Yes, we hoped. Everything was set for birth. My wife had already undergone the balloon procedure in the last 3 months of pregnancy. It looked alright. The volume of the lung increased. Slightly. At least a good sign. Yet not enough to be more than hopeful.
Then, we had 7 weeks left. On paper. My wife had organized everything with the clinic 7 hours away. When to go there, what to expect, and what to do. Meanwhile, I was preparing for my next few weeks. Handling my full-time job and taking care of the kids while my wife was going to be away.
During the night, my wife’s water broke. 7 weeks too early. 7 hours away from the only hospital that was able to help in this situation.
The Worst Possible Scenario
Our little baby was about to be born. Too early. At home. Hours away from the place we needed to be. With a balloon in her lung that was supposed to help develop it, but would now prevent the lung from breathing at all. The balloon was supposed to be removed about 2 weeks prior to birth. It wasn’t at this point.
We called an ambulance. They came and brought my wife to the nearest clinic. With medication, they stopped the contractions. Temporarily. For one reason: To stop labor and fly my wife and the unborn baby to the special clinic 7 hours away. In a helicopter.
They did. My wife landed 3.5 hours later. She was stabilized. The baby was okay. So was my wife.
Waiting for It to Happen
The doctors had a plan. Keeping our baby from being born as long as possible. To first remove the balloon from the lung, and then do a C-section to ensure the best treatment right away.
During this time, I planned my trip down there to be with my wife. I had to leave the kids with their grandparents and take time off from work. What would come was a long, painful wait.
For two weeks, my wife stayed in the hospital. The balloon was removed. Labor still halted. I was ready to see her again. We hadn’t been apart for that long since the first year of our relationship. It was year 9.
Nothing Goes According to Plan
The reunion with my wife and my unborn daughter in the hospital was one of the most precious moments in my life. The C-section was planned for the next morning. We went to bed early.
In the middle of the night, my wife had contractions. Again. Heavy contractions. We knew right away that we weren’t able to make it until the C-section in the morning. It felt as if our baby had waited for me to arrive.
All went quickly from then on. The baby was still small, being early a few weeks. A couple of hours of labor. Early morning on October 1, 2020, our beautiful daughter was born.
The Implication of Life Is Death
9 hours later, she passed away. In our arms. As the most beautiful little baby girl I’ve ever seen.
Our lives are precious. Every single one. I’ve been blessed with three beautiful boys, and a wonderful, strong, gorgeous wife. But she was heartbroken. Just like me. Our little daughter looked perfectly healthy, strong, and “complete”. But her lung didn’t have a chance. It was too small, too weak. A humongous machine assisting with her breathing was only going to put off the evil hour.
We held her in our arms for hours. Then, we had to let her go. There were never any guarantees. Only hope. Nothing has ever been the same since. Nor will it ever be.