HRHS - Letting Poppy Go - a hypoplastic right heart syndrome diagnosis

Letting Poppy Go

Posted on Posted in Congenital Heart Defects, D&E, Diagnoses, Hypoplastic Right Heart Syndrome, Stories

After days of crying, sleepless nights, and considering quality of life/life expectancy issues, we decided to let our baby boy with HRHS go.

By Catt

We found out we were having a baby boy late last year. Since I was 38 and wanted another child close in age to our first, this was the blessing we were praying for. We nicknamed the baby “Poppy.” Given my age, we went through all the testing: we did the MaterniT® 21, a nuchal translucency screening, and an amniocentesis. Everything came back normal.

Then came time for our 20-week anatomy scan. Like my daughter, my son loved being on his tummy. Because of this, technician was unable to get a good look at his face and heart. From what they were able to see, they said it all looked fine. The doctor told me to come back in two weeks to check the other areas of his body.

During the second session of the anatomy scan, I noticed that the technician spent all her time on the baby’s heart. I still didn’t think much of it until the doctor came in and sat down. The doctor then said there was something wrong with the baby’s heart; the right side hadn’t grown correctly. All I could do was cry uncontrollably. I didn’t know what the diagnosis meant, but I knew with the heart being a major organ essential to life, it just couldn’t be a good thing.

Since I was 22.5 weeks pregnant and termination in our state is legal only until 24 weeks. I knew we didn’t have much time to understand what was going on. That very day we went to a pediatric cardiologist who did a full fetal echocardiogram scan of our boy’s heart. The diagnosis from that scan was hypoplastic right heart syndrome (HRHS). We spent the next four days speaking to surgeons and other specialists. We got second and third opinions which were a bit worse than the first opinion. They also found sinusoids which would add complications to any possible “treatments” for my baby.

After days of crying, sleepless nights, and considering quality of life/life expectancy issues with HRHS, we decided to let our baby boy go. The process of terminating a baby at 23 weeks is absolutely horrible. Those against abortion should know that most, if not all, who terminate in the second trimester do it out of necessity. It took two days to soften my cervix enough to perform the D&E. Through the cramping, I felt my little boy kicking and moving (the best part of pregnancy, I believe).

The pain is so real and the feeling so devastating that there are times I don’t think I can move on. But then I look at pictures of my daughter and know that I must. I must move on and live with hope that the soul of my baby boy will come back to us through another healthy pregnancy. He is so very much wanted.

 

CC0 Public Domain image courtesy of PeterDargatz via Pixabay