Our Sweet Simon

Posted on Posted in Posterior Urethral Valves (PUV)

By Michele

I know I made the right choice for my sweet baby, who we named Simon.
I know I made the right choice for my sweet baby, who we named Simon.

I found out I was pregnant with my third child in May 2016. I have always wanted a big family so this was great news. My kids (4 and 9 years old) were very excited. My son wanted a brother and my daughter wanted a sister, of course. My son talked about showing him all kinds of “boy” things. My daughter talked about helping take care of the baby, even helping change diapers.

This pregnancy was different from the others—which is normal—but I kept feeling like something wasn’t right. I had some spotting off and on. I also had fevers every day during the first trimester. When I brought it up, the doctor didn’t seem too concerned.

We kept saying we weren’t going to find out the sex, but a week before our ultrasound my sister, who was due two weeks ahead of me, found out she was having a girl. We decided we had to know too. The day of our ultrasound we found out we were having a boy.

Everything seemed normal until the doctor asked us to come to his office. He told us our baby had some extra urine in his bladder and kidneys but he didn’t seem too worried about it. He said there might be a partial urinary tract obstruction, but that I still had enough amniotic fluid. He wanted me to follow up every three to four weeks.

At 22 weeks pregnant, I went back for another ultrasound. The kidneys and bladder were very dilated and the amniotic fluid had dropped significantly. We were sent us to Children’s Hospital of Philadelphia where our baby was diagnosed with a lower urinary tract obstruction. Everything was explained to us. We understood there wasn’t a good outcome, but we were very hopeful. We prepared ourselves to have a child with many medical problems who would need multiple surgeries.

The process that was explained to us was a series of three bladder taps. They stick a needle through your stomach and into the baby’s bladder to drain the urine and check for kidney function. If there was still kidney function they could put in a shunt to drain the baby’s bladder. Hopefully, the shunt would stay in until birth.

We had one bladder tap done. When we went in for the second one, they told us his kidneys weren’t functioning at all and the amniotic fluid was almost gone. Without amniotic fluid, his lungs would not be able to develop and he wouldn’t be able to breathe, along with multiple other issues. They started talking about terminating the pregnancy as soon as possible since I was already 23 weeks along.

I couldn’t believe they were saying these things. I thought how could I kill my baby? I just wasn’t ready to make a decision like that. They agreed to see me one more time the following week to check for changes. But they knew there was nothing more they could do. I think it was more to give me comfort in the decision.

This was the longest weekend of my life. I didn’t know how I could make this decision. What if there was some kind of miracle? I prayed all weekend for God to give me an answer. I needed to know I was making the right decision either way. I could either terminate now or deliver full term and watch my sweet baby pass on his own. I just didn’t know how I would handle watching my baby die and how it would affect my family.

The next Monday we went back and had another ultrasound. This time all of the amniotic fluid was gone. The doctor, who was very sweet, sat with me for almost an hour, answering all of my questions. At one point she leaned over close to me and said, “If you are looking for an answer, this is your answer” and pointed to the screen. Those words brought me so much comfort since that is what I have been praying for, I felt it was a sign.

We ended our pregnancy on September 21, 2016 at 24 weeks gestation. It was the worst day of our lives. I went from feeling my baby wiggle around inside me to feeling nothing at all. I know I made the right choice for my sweet baby, who we named Simon. It still hurts no matter what.

It has been a month since we lost Simon. I still think about him every single day. The pain has lessened, but we will never forget him.

 

Image courtesy of Pixabay.