Our baby has HLHS. We were shocked at the options the doctor presented to us.

By L. B.

I am 21 weeks, two days pregnant and have decided to terminate my pregnancy. This is my first pregnancy. I had wanted to conceive for several years, but my husband was not ready. Then for Christmas this year, he surprised me with a pair of baby Timberland® boots. It was his signal to me that he was finally ready for fatherhood.

The first time we tried to conceive, I got pregnant. I couldn’t believe how easy it was. I was nauseated and tired the first trimester, but nothing out of the ordinary. I am very athletic and continued running. During my eighth week of pregnancy I ran a 10 mile race. I had a minor incident during week 15 when I got food poisoning and had to be hospitalized and given IV fluids because I couldn’t stop vomiting. But I quickly recovered and by week 19 was able to run a 10K race. Everything had been going pretty smoothly, right up until this past Thursday.

My husband and I had waited anxiously to have our 20 week sonogram. I was counting the days. We were eager to find out the sex. We arrived promptly for our 8:30 appointment. The sonogram technician told us we were having a boy! We were ecstatic. I was so happy that I cried.

Then things took a turn. The technician said she couldn’t get a good view of the heart and would need to find a doctor look it. At this point we really weren’t that concerned. When an OB came in to look, his reaction was not encouraging.  He told us to schedule an appointment for a fetal echocardiogram immediately to determine whether the baby had a congenital heart defect.

We left the doctor’s office with several photos of our baby boy. His profile in the pictures resembled my husband. I was worried about the baby. Not panicked, just worried. I started researching congenital heart defects online. Many that I read about seemed seemed to be reasonably minor.

The hospital called me to come back for the fetal echocardiogram the same morning. My husband met me at the hospital and we went up to the pediatric cardiology unit where we waited anxiously for another hour and a half, still looking at the sonogram pictures from earlier that morning.

Finally we were called into the technician’s office for the fetal echo. A while after that got started the doctor came in and said she’d been observing the screen from a separate room, and that she needed a few more views before meeting with us.

When the echocardiogram was done she was finally able to sit down with us and tell us the prognosis. Our baby has HLHS. Hypoplastic Left Heart Syndrome. We were shocked by the four options she presented to us.

  1. Terminate the pregnancy

  2. Go full term and give our baby “comfort care” after delivery

  3. Have our baby undergo the Norwood series of three complex open heart surgeries, the first and most dangerous of which would take place within hours of his birth

  4. Put our baby on a list for a heart transplant

After discussing and researching HLHS for hours, we came to the conclusion that termination would be best for us, and for our unborn baby boy. I am scheduled to undergo the induced delivery. I can’t even believe it. My mom and my husband will be with me. I don’t know how I will survive the next few days.

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