Carlla’s Story

Site created on December 28, 2018

On Friday December 7, 2018, our lives changed forever. At a routine ultrasound to see our sweet baby baby boy David Matthew, it was discovered that he was missing a kidney and the kidney he did have, was cyst-filled and non-functioning. This diagnosis came with other devestating news. Because of the non-functioning and non-existing kidney, there is no amniotic fluid being produced and no bladder. Amniotic fluid is essential in lung development for a baby. Therefore, without the Amniotic fluid, David’s lungs would never develop and after being born, he wouldn’t be able to breathe. Pulmonary Failure. Not Compatible for Viable Life. For some reason, those were the words that have stuck in my head these last few weeks. We were devastated. We were left with two recommended options. Terminate the pregnancy, or carry David to term, deliver and hopefully get to spend a short amount of time with him before he passed. Termination wasn’t an option for us. His heartbeat was strong, and every other piece of him was normal except for his missing puzzle piece. As long as he was inside of me, he was happy, growing, moving (ALOT!) and “normal”. We could see him putting his hands in his mouth and even at one ultrasound placing his hands together like he was in prayer. After a few days of crying non-stop, Brad and I started doing our own research. That lead us to a name for his syndrome- Potter’s Syndrome. Unilateral Renal Agenisis to be more specific. Upon doing this research we were surprised to find that there have been babies that have survived! The treatment used is called Amnioinfusion. Now, this treatment does nothing for the actual issue with the kidneys but, it can help the baby’s lungs develop to a point that when he would be born, he would be a pulmonary survivor long enough to get him on a special kind of dialysis called Peritoneal dialysis. This would be followed by a kidney transplant after a few years. It was a small glimmer of hope. At 8am the following Monday (2 days later) I started making phone calls to every hospital in the United States that treats Potter’s Syndrome. Unfortunately, there are only a handful of Hospitals that do the infusions. Most of them are Trials, which are very specific and David wasn’t a candidate for. Although his one kidney is non-functioning, in research terms, he wasn’t the worst case scenario which is a child with no kidneys-Bi-lateral Renal Agenisis. After talking with a doctor at John Hopkins and not being eligible for their trial, I was given the number to Cincinnati Children’s Hospital. It’s been full-speed ahead ever since. We left on Christmas Day. Leaving Domenik, Daniel, and Stella was hard but it is what we had to do. We had testing all day on December 26th and met with a team of doctors that are willing to take on David’s case. Through extensive testing, MRI, Fetal Echocardiogram, and ultrasound, they found that Miraculously, though still in the abnormal range, David’s lung development isn’t that far behind a normal baby! We have decided to pursue Amnioinfusion. We will be making weekly trips to Cincinnati for treatment until he is delivered. After that, it is in God’s hands. We still need a miracle as this treatment is very new and the success rate is extremely low. There are only a handful of babies that have survived. But, to us, that statistic is better than doing nothing and being guaranteed that he won’t survive. We will do what we can now and let God take the wheel when he is born. We won’t give up on our little man. One Stone at a time baby boy.......

Newest Update

Journal entry by Carlla Detwiler

The days are long and the years are short….have you ever heard that?

That’s one of those things you hear when you’re younger and you nod and smile and really have absolutely no idea what that truly means. 

Well, let me tell you….I know exactly what it means now! Because, I blinked and three years have passed! 

These last three years have brought me the longest days of my life and the shortest years. They have given me sadness and heartbreak, but I’ve also seen triumph and witnessed miracles. I’ve have seen strength from my son that is unimaginable. His fight, determination and his joyful soul is an inspiration to me and so many others daily!

Why were we given such an amazing gift? Out of all the babies with David’s condition that don’t survive, why did He choose my David? Why did He choose us? Shamefully, I don’t think I quite appreciated the gift of my sweet boy right from the beginning. It was all so clouded with diagnoses, learning, and to be honest,  just working our butts off to get through another day. Countless hospital stays, and weekly appointments. We didn’t know a thing about dialysis, cerebral palsy, blindness and so many other challenges. The exhaustion, anxiety, and worries took over. There are so many days that I already don’t remember. 

While Brad and I were talking last night, he asked me if I remembered anything about the day before David was born. I can’t remember a thing and neither could he. It’s almost like our lives reset on 4/9/19. 

But that day….that day will be burned into my mind for eternity.

 I remember my doctor’s face as she looked at the ultrasound screen and feverently moved the ultrasound wand all over my belly looking for a heartbeat. I remember the feeling in the pit of my stomach when my eyes met hers- mom to mom, and a silent nod when she wasn’t a doctor for a moment and just a mom like me. Sympathizing. A quiet understanding of what was going to happen. I remember calling my dad and telling him to get mom and get to the hospital.  I remember having to let go of Brad’s hand and being wheeled down a long, sterile, white hallway to the delivery room. His eyes meeting mine and him telling me he loved me. A love so deep as I know he would have traded places with me if he could have.  I remember the silence in the delivery room when David was pulled out of me. The tug and the pull and the silence. I remember the minutes that seemed like hours when we were waiting for the transport team to bring David in for me to get my first touch of his hand and smell of his sweet head. I remember thinking to myself that I couldn’t ever forget that touch or smell, because I wasn’t sure if I’d ever get that chance again. I remember the drop of holy water drip down his face as my uncle baptized him. He was touched by God. That was so important to me. I remember looking over at Brad, who’s face was filled with worry and uncertainty. A face that I would normally look to for comfort, was just as confused and scared as I was. I remember our parents, my uncle, and my brother standing by stoic and somber. An awkward silence broken by my intermittent sobbing. I remember looking into my moms eyes as she quietly understood and then held my hand and prayed. I remember hearing the click of a camera as my friend Mandy was there to document every second of David’s life. I wanted every picture I could have of him. 

And then he was gone. Wheeled away just as quick as he came. “David is a very sick boy.”. The words from the doctor who was explaining things to us after he was transported and we were left alone in a recovery room. I can remember her face but I never heard a word she said after that. 

Things were grim. 

But then, the night came and he made it through. Then the next day came, and he made it. And by day three as we witnessed David’s first miracle, he was breathing room air. That’s when I knew. That’s when I knew everyone was wrong. That’s when I knew that going through the Amnioinfusion process to get him to birth was the right decision for us.  This tiny 4lb baby, that had tubes and wires completely covering his tiny body was going to fight! Brad and I had said from the beginning that we handed it over to God and if David was going to fight, we would fight for him. He gave us enough hope everyday to keep pushing through. He has taught US so much. 

I think it’s safe to say that over the last three years, we’ve all seen his fight. We’ve all witnessed His miracles and I know now why he’s here. 

He was chosen.

He’s here because he was meant to be here and to show us all what strength is, and what hope means. From what I’ve learned over the past three years two of the most important things in life. These days David is doing well! After his transplant in December, his new kidney is working great, his therapies have him moving towards new goals, and we are on track to start preschool in the fall. He loves music, his siblings, his pups, and chatting with everyone. He brings a smile with him wherever he goes and can change a bad day to good just by being with him. His strength is intimidating at times and makes you look at the world and life in a completely different way. A way that has changed my life for the good. I appreciate everyday with my family. We are so incredibly blessed! 

Today, my tiny miracle is THREE! He is thriving, happy, and we are going to spend the day snuggling, learning, and singing Happy Birthday! 

The days are long and the years are short. Don’t blink, and always remember- If God puts a Goliath in front of you, there must be a David inside of you! 

Happy 3rd birthday David Matthew Detwiler! 

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