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The world stops

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Part 4: This page

During a control ultrasound on the 19th week (August 12th, 2022), our technician started talkative but at some point she went very quiet and it looked like she was having trouble getting some images. Sergio started to feel very stressed. She apologized and told us she was going to look for help, because Abby’s position wasn’t helping to get a good image of her heart. In a moment she was back with another person who helped her take the rest of the images, both of them were eerily quiet. Once they were done, they left the room, telling us a doctor would be with us soon. They even forgot to give us the pictures they printed and left them hanging from the machine.

Dessireé said she was afraid at some point, but blamed the awkwardness in Abby’s love of hiding. On the other hand, Sergio was beyond panicking but didn’t say anything hoping it was just a bad feeling.

It took a long time for the doctor to come in, when she finally did, she asked us if we knew why we were there. Dessireé told her that we were there to make sure Abby was developing well since she was conceived through IVF. The doctor then told us what she was seeing, time stopped. I think we didn’t cry right away, but deep inside we were broken. It looked like Abby had a fatal congenital heart defect called “hypoplastic left heart syndrome (HLHS)”, where the left side of the heart doesn’t develop and there is no cure. We did not know what could have caused this and the doctor didn’t either. They told us this was not because of something we did or didn’t do since there is no known cause for HLHS.

This congenital heart defect is rare, accounting for 2% or 3% of all cases of congenital heart defects. We were part of that percentage and were completely devastated by the word fatal.

The doctor offered several options: we could terminate the pregnancy before 24 weeks (legal threshold to terminate a pregnancy in Illinois at the time), continue to term and do comfort care waiting for Abby to live as long as she could after birth, or doing palliative surgeries.

We decided to give her the chance to live. She will have to make it to 39 weeks, in order to induce her and then start her journey of three palliative open heart surgeries: the Norwood (within the first weeks of life), the Glenn (within the first six months of life) and the Fontan (around her second or third birthday), and later in her life she will need a heart transplant.

We were told that the majority of babies with this condition have no problems in the womb since the mother is providing oxygenated blood, and only a small percentage dies before being born.

Our next step was an appointment with a specialist to confirm the diagnosis. With only some weeks of life, our little one had to see a cardiologist. We have never been so sad, the impotence, uncertainty and fear were just too much.

We did not feel completely comfortable with the idea of a little baby going open heart surgeries, but everywhere we searched, we found that other babies go through these surgeries in the United States and the survival rate has improved over time.

We have been living in the United States for several years, but we are from Costa Rica where most of our close family lives. During those first days we felt really lonely for the first time, being so far away from family. Having some friends around and talking helped, but thinking about what was coming was hard. Best case scenario, Abby would survive the surgeries and at some point in her life she would need a transplant.

Regardless of the news, we were happy to be able to see Abby once more. Our little baby already survived freezing and thawing, and since Dessireé felt her kicking since her 14th week with an anterior placenta, we knew she was really strong.

Story - Part of a series
Part 4: This page