First Diagnosis …Incompatible for Life

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Lower Urinary Tract Obstruction.
His underlining diagnosis…. Posterior Urethral Valves. This is what caused it all. This is what happened to my son when he was newly being created.

I did a lot of research about this when it was all happening. I learned a lot about the bladder, kidneys and everything in the human anatomy. I needed to know what could be done with my son. I needed to know the options we had for him
I needed to know the survival rates and statistics. I needed to read somewhere that my son can survive this….

But I didn’t find that anywhere. Turns out LUTO is actually one of the most devastating causes of fetal death in babies. More than most parents, terminate their pregnancies because there is just no hope, no cure and no way for a baby to survive this abnormality. Once a baby has no amniotic fluid, their lungs stop growing. They become “incompatible for life.” A term that was used a lot in those three months before the twins were born.

Incompatible for Life.

What do you say to that? What “…but…” can you come back with? Not much. All I had in my arsenal of comebacks was …but God!

I remember sitting in a conference room and one male doctor, he was a neonatologist. After he gave us his speal about how there no is chance of survival, we were in shock. I remember asking him what the survival rate was for a boy like ours. He said maybe 30%. I remember thinking, okay cool. We got 30% that we can hope for. Then he said, but as the pregnancy progresses, it will get worse. I was only 24 weeks when he said that. And I hit him with my first… but God.

When I was 26 weeks along doctors did a vesicocentesis. Here they stick a very large and thick needle through my belly, and then stick it through my sons belly, and they take a sample of the fluid in his bladder. They test it for infection and gunky stuff. And I remember the doctor saying “he is swimming away. He doesn’t want to be poked.”

And they kind of laughed like it was no big deal. And, honestly, I had no idea if it was or not. But then the doctor grabs my belly and pinches it really hard. And he says, “I got him!” And he signaled to the other doctor to get the needle and do the procedure. And they did. And then he let him go and it was over.

The procedure was so incredibly painful I had an outer body experience. ( I’ll write more on that another day) …but I broke when I thought about what pain my baby must be feeling. Can you imagine?? This large needle stabbing you while you are being held down?! Poking you through your abdomen and going into your bladder?? No pain meds. .. nothing. This was the first time that my heart broke for my son.

For weeks it felt like it was “poor me, I’m going to lose my son.” But this first procedure… was when something clicked in me… my son is in pain!! No more!! No more pain for him. He doesn’t deserve this.

I was so shocked when I read about what was going on with my son in utero. I felt so bad for him. Was he in pain?? Can he feel it? Does he have any idea that something is wrong?? I felt that somehow this was my fault!! And I had this dire need to protect my son. I didn’t want him to be hurting. But it was inevitable. And it became so painfully obvious during this first fetal surgery.

After this, though, I made sure that he received medication for the pain. I told the doctor he NEEDED pain meds. I was thankfully reassured that the next procedure my son would be given medication to sleep. Which he did, thank God, during our second procedure. I was reassured. I felt hopeful and was so blessed to know that, even though doctors gave us such a low percentage of survival… because those were the numbers… numbers and tests and ultrasounds showed that he would not survive…. although it didn’t look good at all… our doctor had enough hope to try. And I am forever grateful for that!!

My son… first described as Incompatible For Life. Now, two years later, described as an amazing Miracle!!

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