After having spent a restless night trying to sleep after my OB/GYN had given us the bad news that our daughter’s heart was malformed, we got up to face the day. My husband and I were anxious the whole morning. We just wanted an answer, a label, something to tell people.  Our family watched our son as my husband and I went to this new doctor, the perinatologist. It was odd to sit in a waiting room where you knew each person was facing something difficult. No one there was having a “normal” pregnancy. Not that you’d know it by looking at them, or me. Different ages, ethnicities, family dynamics, and lifestyles all scattered about the room. 

We were taken back. They took my vitals, I left a urine sample, and we answered questions from the staff. A sonographer (the person who does the ultrasound) came in with a man who was introduced to us as being a pediatric cardiologist (heart doctor for kids). He explained that they were going to look around at my daughter and talk amongst themselves but at the end he would explain what they saw. They went to work trying to get a good look at my daughter’s heart. She wasn’t entirely cooperative as is usual for babies and yet they were able to see tiny structures inside my baby who was inside of me at only 18 weeks gestation. It was incredible to see what could come of an ultrasound and a specialist. I heard them talk about parts of her heart and types of blood flow. I was familiar with all these terms but I didn’t know enough to understand what all of it meant together. This medical practice had a large screen TV mounted on the wall opposite me with a live feed of what they were looking at on the ultrasound monitor. I was fascinated and, despite the circumstances, happy that I got to see more of my baby girl.

After about half an hour, they stopped. In a thick Colombian accent, the doctor told us that our daughter had a condition called Hypoplastic Left Heart Syndrome (HLHS).

He explained that it meant she was essentially missing half of her heart. A normal heart has four working chambers, hers had only the two on the right side. The left side of the heart, which she was missing (well technically it wasn’t missing it was just SO small, had a missing valve, and some extra holes that made it functionally nonexistent), is responsible for pumping oxygenated blood out of your heart and into your entire body. He went on to say that without intervention, babies with this condition die a few days after being born. He said that many years ago, there would have been nothing we could have done but wait for her to die. However, medicine has progressed. My internal dialogue prepared me to hear what I thought he would say next, that my daughter had a 5% chance of living.

He continued by saying that our daughter would face a series of 3 open heart surgeries by the time she was 3 years old but that there was an 85% survival rate IF everything went to plan and IF she had no other conditions. There was a possibility of needing a heart transplant later on in life as well. Most people with HLHS lead a mostly normal life but tire more easily. I couldn’t believe what I was hearing. I was ecstatic! That was so much “better” than what I had prepared for.

The pediatric cardiologist explained that this would not resolve on its own or get better as she grew inside me. She had been this way from about 4 weeks gestation. He also assured us that this wasn’t our fault, it was just a mutation that happens sometimes. From what is understood so far, it is sometimes caused by a genetic condition and other times it spontaneously occurs. He handed us a folder of information about the cardiology group he belonged to that had information about their practice and most importantly, their success rates for specific surgeries in comparison to the national average success rates.

PAUSE: If you are facing a similar situation and your care providers are unwilling to give you their statistics, try to find a different practice. That is information you should be allowed access to so that you can make the best decisions about who will care for your child

He gave us hugs and an attempted encouraging smile before he left. It was odd, as he spoke he sounded as if he didn’t want to be telling us that information. He sounded like he was telling us some horrible truth that he wished he could shield us from. This was the same for every health professional we spoke to, they all got emotional when they spoke about her. It was another sign to us that this was critical. When even your doctors feel the weight of the hard path you are headed down, it brings a somber reality into focus. Sure 85% survival rate sounded great but no one should have to talk about the predicted survival rate of their child. You shouldn’t have to think about a funeral in case your child dies and there was definitely a chance that she would.

The perinatologist came in. He explained that we would have to give birth at a specific hospital here in town because it was the only one with the staff and equipment needed to keep our daughter alive once she was born. He said that even if we tried to go to a different hospital near us, they would send us away due to her condition! He also said that my OB/GYN wasn’t allowed to go to the hospital our daughter would be born at but he was so if it was alright with us, he would deliver our baby. He then went on to explain that while some HLHS babies can be born vaginally we would most likely need to do a planned c-section.

He asked if I exercised. I realized I was wearing athletic clothing and felt rather guilty having to tell him that despite appearances, I definitely did NOT exercise. “Oh good! Because if you did, you’d need to stop” yet again, I couldn’t believe what I was hearing. A doctor telling me not to be active?! Pregnancy is a weird world, this one even more so.

He gave us multiple chances to ask questions, explained what the plan of care would be, and his last piece of advice was “Mayo Clinic”. A lot of people go to the internet to research when given a diagnosis like this and he wanted to make sure that when we did the same we went to a reputable source like the Mayo Clinic (yes that’s what it is called and yes it’s a real thing and no it has nothing to do with mayonnaise). So if you’re about to go do the same, start there.