Friday, October 14, 2016

Our Journey Through Fetal Medicine: LUTO

Within two days we found ourselves sitting at the Regional Perinatal Center in Odessa, Texas. We were waiting to see both the specialist and a genetic counselor. By this time I had looked up our doctor and realized he was a specialist all right--he had previously been at Vanderbilt's fetal medicine program and his picture even was circulated via email several years ago for a surgery he performed in utero. I thought that was pretty cool; we pretty much had a famous doctor.

I had no idea what a genetic counselor was, but I was pretty sure we did not need a therapist so I was hoping to miss that appointment.

While waiting I started what would become a routine for us--to take a picture before every doctor's appointment. I wanted to document every step of this process. Plus, I was trying to take our mind's off of our fate. I was trying to capture the few times we could smile.

meeting the specialist for the first time

When we met our doctor, we were already in the midst of our ultrasound. He came in and took over the ultrasound. I was shocked. I had never seen the doctor do the ultrasound, but he guided it so easily.

As he was sitting down and shook our hands, he said, "Congratulations on the little boy!" We both laughed and said that we had not intended to find out the gender but now that he had told us, we thanked him. He was shocked. "You don't know the gender? We have to know the gender."

He began to explain that what our baby had was a rare condition called Lower Urinary Tract Obstruction, or LUTO. This most often is found in males, so it was presumed our baby was a boy. He wanted the blood tests we had already done to confirm that, but since we had not wanted to find out the gender this information was not included on our lab results.

The prognosis for LUTO was fair. If the baby was indeed a boy (which no one really even doubted), the doctor would draw fluid through an amniocentesis every 48 hours up to 3 times. If the kidneys showed function on that test, he would send us to Houston for a shunt to be placed in the baby's bladder that would act as a catheter until delivery. Upon delivery a minor surgery would be done to correct the blockage from the bladder. About 50% of these boys need dialysis/kidney transplants throughout life.

If the baby was a girl, it was fatal.

We tried to soak that in. It sounded pretty promising. We knew the baby would most likely be a boy. Its kidneys seemed to be functioning on ultrasound. And 50% isn't so bad--but in the big scheme of things, what is a kidney transplant? We went to church that night telling everyone to hope for a boy and that we were going to be leaving for Houston within the week.

The next morning I was about to start a new Bible study when my OB's office called. "Hey, they said you want to know the gender now."

"Yes! Please!"

"Congratulations, Avery, it's a little girl!"

"There is nothing they can do," I said as I dropped the phone.

Panicked I grabbed my stuff and got Henry from the nursery. Cash was in a meeting, and I could not get a call through to him. I finally texted "come home."

When he called me back, he was already crying. He knew. We were all in shock. How could this happen??? We had a condition less than 1% of babies get and in that 1% we have another 1% likelihood it is a girl. That isn't even real life.

I waited 5 hours to talk to someone at the perinatal center. It was only after I had screamed at the receptionist that I would not wait until the end of the day to talk to someone and hung up that the office manager called back. When I told her what was happening, she said the genetic counselor was in the NICU at the moment but our doctor would call us right back. And he did.

He told me how sorry he was about the fatal diagnosis. He wanted to do an ultrasound the next day to confirm the gender.

I called my OB's nurse back and asked her the accuracy of the blood tests. She said 99%. Cash and I agreed we had been 1%ers this whole time, so we would most likely get a different result on the ultrasound the next day.

Your mind plays lots of tricks on you when you are going through a crisis. For me I mostly felt denial. No way this was really happening. I would try to laugh with the doctors or make jokes. I could not let it sink in that we were losing our child.

To learn more about our journey through fetal medicine and read through each phase, you can go click on a link below that will take you directly to that post:

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