Mandy and Steven: Hydrops Fetalis, Bilateral Renal Agenesis

Jun 1, 2017 | Bilateral Renal Agenesis, Hyrops Fetalis, Prenatal diagnosis, Stories

Infant - Renal agenesis

Mandy and Steven already knew they were expecting a boy for their fifth child when they went to their 20-week ultrasound. They didn’t know however, that their baby had multiple issues that would result in him dying a few hours after he was born.  Despite being encouraged twice to terminate, they chose life and are grateful they did.

Miracles Can Happen

Finding out your baby is going to die

At 16 weeks, Mandy and Steven decided to pay and have an ultrasound that would tell them the gender of their baby.  Already having four girls, they were very excited to learn that their fifth child was a boy. During her 20-week ultrasound, Mandy learned there was something wrong with her baby.  She recalled, “My daughter and I were sitting in the doctor’s office when he came in..and said, ‘There is something seriously wrong with your baby.’ It was just a punch in the gut.”

She was referred to maternal fetal medicine to learn more about their baby’s condition.  It was there that they learned that he had hydrops fetalis. A condition that causes two cavities of the body to fill with fluid.  At the appointment they also learned that he had an enlarged heart. At that point, they were given the option of terminating their pregnancy.  Steven said, “To me, ‘it’s amazing that they would even ask us this.” Their doctor said that he would not survive and would be stillborn.  


Testing reveals more issues

Mandy and Steven pushed for more testing to find an answer to why this was happening.  Mandy said, “We wanted to know what was happening because they didn’t know. They just knew that he had hydrops.”

After waiting a few more weeks, they found out that their baby also had a rare condition called bilateral renal agenesis; he had no kidneys.  Doctors explained that both conditions their baby had would kill him. “At that time, we were again asked or told that we could terminate; he’s not going to live.”  Mandy said. Despite the insensitive option presented, Mandy and Steven both wanted to meet their son.  


Baby boy lived for 1.5 hours

Their doctors tried to prepare Mandy and Steven for the outcomes of carrying their son to term.  Mandy recalled them telling her that he would most likely be born very deformed. To the doctor’s surprise, he was born at 33 weeks alive and perfect.  

Mandy remembers that day as “one of the happiest days of my life.”  They were able to spend an hour and a half with their son. Their four other kids were able to meet, love, and hold their baby brother. Something Mandy and Steven had tried to prepare them for since they learned of his diagnosis.  Mandy said, “All of our girls got to hold him alive and we did too. It was the total opposite of anything they told us could happen. It was amazing.”


Making the same choice again

When asked if they would choose their experience again, Mandy replied, “I would in a heartbeat. It was the best decision for us, for our family.”  She advised others who are given the option of terminating their pregnancy to, “Give yourself a minute. Step back and think about it.”  

Both Mandy and Steven felt like they had too much information thrown at them all at once.  Then they were given the option of terminating the pregnancy. Something that Mandy said, “You have so much going on in your head that you cannot make a rational right decision.”

Steven added, “Just don’t give up.  Medical professionals don’t know everything.  Everything that we were looking at was totally opposite from what they told us..everything was totally reversed from they just kept telling us.  Just don’t give up. Do your research and figure out what is best for your family. It was amazing.”

Through their decision to carry to term, Mandy, Steve, and their daughters were able to spend precious moments with their baby.  Something that Mandy said she “wouldn’t trade for anything”.


Pin It on Pinterest