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Bilateral Renal Agenesis- The Story of Jack

bilateral renal agenesis tfmr

This is the story of Jack. His parents chose to terminate a very wanted pregnancy for medical reasons after finding out he had bilateral renal agenesis. They made the choice to spare him pain and take on the pain themselves.

In January 2019, Josh & I sought assistance from a Reproductive Medicine to conceive. On January 23rd, our first IUI, we were hopeful a pregnancy would occur. We patiently waited for the days to pass so I could take a pregnancy test. The pregnancy test was negative on February 2nd; feelings of disappointment.

We went to lunch then drove to pick up a door we were planning to use as decor above the couch. I became very nauseous during the drive which was odd. Later that night, I took a pregnancy test and it was positive. Initially, our due date was October 16th.

OMG! I’m pregnant – for the 1st time in my life!! We were ecstatic!! Our 1st appointment/ultrasound was March 4th – pregnancy was confirmed, but the doctor expressed concern because Jack wasn’t measuring correctly.

We were asked to come back in 1 week – we did and because Jack had grown the due date was pushed back 1 week – October 23rd. After this appointment, we graduated to an OB Clinic.

We told my Mom a few days before our 1st OB Clinic appointment at her birthday dinner.

Josh & I chose an OB office because it was closest to our home – 30 minutes away. Our first appointment was March 26th. I had a lot of questions including “why the discrepancy in growth”; we knew when I ovulated.

It was stated it was okay to have up to 1 week in discrepancy. After presenting facts and questioning their logic of “pushing the due date back”, I was told “hope for the best”.

The next day bloodwork was drawn to test for genetic issues and to determine sex.

An ultrasound was performed the beginning of April, “everything was okay”. I questioned the “gestational sac” size because it was measuring 1.5 weeks smaller than Jack. I was told “the radiologist didn’t mention anything in the report”.

We told my Dad after this ultrasound.

Our next appointment was April 23rd. Again, we were told “everything is great”.

Our gender reveal party was late April. Everyone was ecstatic to know it was a boy!

During the month of May, I verbalized to those close to me “it feels like he’s stuck on my left side”.

The appointment in May was on the 24th; again “everything was great”. The doctor sked if an anatomy scan was done yet. When I replied no, he said to schedule it upon leaving. I did.

On June 6th, we went for the anatomy scan. The scan started and it seemed “normal”. The technician asked questions and we answered them. One question she asked, “did you have genetic testing?”, was odd to me.

I explained we had it done at 10 weeks and the results were “low risk”. I asked if there was something wrong and she politely said “I was just asking”. She proceeded to say “he isn’t moving so I can see”.

She recommended I drink orange juice then we’d continue. While she was obtaining the orange juice, the phone in the ultrasound room rang. I thought this was odd. She returned and I drank the orange juice.

We continued the scan and the phone rang – we sensed the person on the other end was talking about our scan. The phone call ended and the technician told us she needed towels. I had to urinate and she instructed me to use the restroom then she’d return.

Josh and I waited for her to return. When she did – there were no towels in hand. Instead, there was a yellow post-it and she instructed us to go to the room diagonal from the ultrasound room to wait on the doctor.

As Josh & I walked to the room, I looked at him and said “something is wrong”. He remained positive. We sat down and waited…the doctor who saw us wasn’t a obstetrician; he was a gynecologist, but he was the only doctor in the clinic that day.

What he said next confirmed my fear. And shocked both of us – “your son doesn’t have kidneys, a bladder, or amniotic fluid, his brain is prolapsed, and his prognosis is grim.”

He said “I’m sorry,” explained we would have an appointment with high risk OB. He left.

Josh & I were devastated – nobody came into the room to offer support or to ask how they could be supportive. We walked out of the building without one person acknowledging we were just told our son was going to die.

Upon returning to my car, I was hysterically crying and called work and told a supervisor I wasn’t returning to work that day. We had an appointment the next day with high risk OB before reaching the end of the parking lot.

The next day we went to the 4th Floor of the POC and had a diagnostic ultrasound which confirmed the previous day’s report. The high risk OB confirmed Jack wouldn’t survive.

Then we met with the geneticist – who I firmly told I didn’t want to hear about statistics because I can read the damn stats online. I wanted to know our options – allow the pregnancy to go onward, induce, or terminate.

After discussing all options, Josh & I decided to terminate. It was best for Jack. If born, he would’ve lived a short amount of time because amniotic fluid helps mature lungs and he would’ve struggled to breathe. Neither Josh nor I wanted him to struggle. The placenta was the only reason he was living.

Because the only physician allowed to complete consents wasn’t available until the following Friday, I had to wait. On Friday June 14th a family member accompanied me to sign the consents.

We also learned we’d have to choose a funeral home because of state law. We weren’t told this prior and this infuriated me. It was a punch in the gut. I met Josh at the funeral home later in the day and completed funeral arrangements.

On June 17th, I went back to the clinic and had dilators placed. I was there alone (Josh had to continue working) and the nurse said “I wish someone was with you.” I texted a family member and she joined me.

I will never forget this day. Prior to having the dilators placed, I requested to record his heartbeat (I wanted it and Josh had never heard it). With the help of a resident we recorded it.

After recording Jack’s heartbeat, we started dilator placement. I was in excruciating pain and cussed during the entire placement of the dilators. My family member was my advocate this day and demanded pain and anxiety medication. We waited on Josh to come from work because I wasn’t emotionally or physically able to drive home.

The following day, June 18th, Jack entered this world; he’s considered a stillborn because his heart was stopped before delivery.

I live one day at a time now…some are good; some are bad. I’ve changed…I’m angry at the physicians because I wholeheartedly feel if someone would’ve listened or followed up, Jack wouldn’t have had to live until 22w6d squished.

For those who’ve asked, there was nothing genetically wrong. There was a deletion on chromosome 19 in which he would’ve been a carrier of an eye issue. There are no concrete answers. The suspected recurrence rate could be as high as 50% or as less as 3-4%. Genetic counselor seems to think the highest would be 25%.

Melissa Visger resides in Pennsylvania with her husband, Josh, and two dogs, Liberty & Kendall. Together, they enjoying hiking and spending time with family.

Read April’s full story by clicking above.

Read stories of terminations for medical reasons by clicking above.

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bilateral renal agenesis tfmr