During the second ultrasound at eighteen weeks – although she doesn’t mention it – the ultrasound tech sees something on the screen that is of grave concern. A few days later, someone from the doctor’s office calls, saying that the doctor needs to go over the ultrasound results with us. This seems out of the ordinary, but we feel confident and continue to trust that God is in control. Plus, the chances of something serious are usually pretty low.

The time comes for the the follow-up appointment. Our doctor explains that he noticed a VSD (which stands for Ventral Septal Defect) during the scan, but he doesn’t seem very concerned. He explains that it is a relatively common heart problem (as heart defects go) and one which is easily corrected. He also expresses concern about other possible anomalies and refers us for a more extensive ultrasound. The new revelations are concerning but with the doctor’s confident comments about the VSD (that we just need some clearer pictures of the heart), we are a bit shaken, but come away with the sense that the problems are fixable.

Prior to the visit, the specialist’s office communicates with us. They explain that the in-depth ultrasound will take quite some time, and provide details about what to expect. Mom is told to drink a lot of water and not use the restroom when she arrives at her appointment — not fun, even without the pregnancy! Since dad is scheduled to be off work that day, we decide that the children will stay with him while mom goes to the appointment alone. This way, mom and the staff can focus on the exam.

So at twenty-two weeks, mom makes the hour-long journey to the specialist’s office, waits in a packed waiting room for what seems like “for-e-ver.” Once called in, mom lays on the ultrasound table for at least an hour, having to turn one way and then the other. The ultrasound tech stays focused on what she’s observing on the screen while chatting with mom reassuringly. After some time, she confirms that our baby does have a heart defect.

Mom feels her own heart sink as she asks the tech what that means and if the defect is operable.  The tech explains that it is a common defect, but that it may indicate a more serious problem.  The tech then heads out to get the doctor, and when she enters the room, mom notices that the doctor already looks quite concerned.  As the two of them discuss the various images on the screen, the doctor becomes rather somber, and begins to explain to mom that she is looking for specific abnormalities, such as “rocker feet,” clenched fists with overlapping fingers, and an under-formed brain.  Not good. One bit of positive news though: some of the anomalies the OBGYN wanted to check for turn out to be nothing.

Mom holds on to hope at this point, reasoning that if our child is born with a disability that we will find a way to manage.  The doctor then spends quite a lot of time vigorously shaking mom’s belly, trying to get the baby to wake up. She explains that the baby’s legs are stiff and unbending, another sign that things are just not right.  Mom begins to think that perhaps this baby may have some fairly significant health issues.

Without revealing her suspicions, the doctor exits the room to analyze mom’s blood work. During this time, mom is escorted to another room, where she nervously waits, alone for quite some time. Finally, the doctor reenters to deliver the devastating news: “We got the results of the blood work and combined with what we saw on the ultrasound, your baby has Trisomy 18 and will not live.”

Before the blood work, the doctor had planned to order more in-depth scans of the heart condition, but with the confirmed diagnosis of Trisomy 18, she deemed them unnecessary since the baby will most likely die in the womb or within the first few minutes after birth.

They provide mom with tissues as she sits stunned, traumatized, and in tears. After a few moments, mom says, “I won’t abort this baby, I could never do that.” The doctor replies, “I don’t blame you. I agree with you 100%.”

The doctor goes on to explain that they could take a portion of the ultrasound audio recording of our baby’s heart and upload it into a teddy bear, so that we can listen to it when we want. Of course, mom accepts. Normally there’s a charge for the service, but due to the circumstances, they do it for free. When they bring in the teddy bear, mom can barely hold herself together.  The nurse also struggles to keep her emotions in check as she hands the bear to mom and explains how it operates. 

Next, mom waits for quite another length of time for the genetics counselor and a student who is shadowing him.  He goes over a very long questionnaire with mom regarding family history of genetic issues. More details about Trisomy 18 are explained. They discuss mom’s history of repeated C-sections with our other children. The genetics counselor suggests that they could spare her some discomfort by inducing labor early so that she will not have to endure another C-section. It takes a moment to realize what he is saying – that in essence she’d be ending the baby’s life – but she resolutely replies, “No, I could never do that.”

With the visit at its conclusion, the staff bring the teddy bear with the audio of the ultrasound. Mom has to face going out through the packed waiting room filled with other expectant mothers, world shattered, to get to the parking garage.

Once she reaches with privacy of the car, she immediately calls dad to deliver the most terrible message imaginable.  Sobbing, she calls home to report the heartbreaking news. She can barely choke out the words as her tears fall thick and fast:  “Our baby is going to die.” Dad is devastated. There are no words. 

Normal life is going on in the background – mom hears the kids laughing and shouting and going about their normal routine, while she and dad are having to face the unthinkable:  we are going to lose our precious baby, a baby that we have been praying for and dreaming about holding.

The worst case scenario lies ahead of us: we won’t have the privilege of seeing our precious baby boy grow up. Although previously unthinkable, we now have to plan on losing him.