Ryan Edward McClain

Would you want to know? If something awful were going to happen, would you want to know that it was going to happen, but not know when? Or would you just want to live in ignorant bliss until the terrible thing happened? Either way, something horrible happens, and knowing or not knowing cannot stop it from happening. 

We started out in December like this:

We'll call this phase ignorant bliss. We were so excited to add another member to our family! Our expected due date was August 26, 2016. We kept it pretty quiet, and only shared with our family and very few friends, but we were already making all those baby plans that everyone makes - names, nursery, etc.

As part of our routine prenatal care, we participate in genetic screening that includes a nuchal translucency ultrasound at 13 weeks that examines the fluid at the base of the baby's neck as a screening for Down syndrome and checks for heart defects and other genetic disorders. We showed up for our appointment on February 22 at 7:30 am feeling nothing but excited to see some images of our baby. We did this same ultrasound with Gavin, and it gave us some of the best ultrasound images we have of him; we expected the same for round 2. After the ultrasound technician took all the photos she needed, telling us what each one was, she said she had to take a few minutes to catalogue them and have a doctor review them before we left. We sat in the room while we waiting, talking about our plans for the rest of the day and trying to entertain Gavin with toys and books.

When the technician returned, there were several doctors with her. Wasting no time, one doctor said, "I'm sorry, but it looks like your baby has a serious heart defect, as well as some other defects that we want to go over with you." They reviewed the defects with us, which included the heart defect, a very enlarged bladder (the size of the baby's head), an omphalocele (intestines developing in a sac outside the abdominal wall),and apparent neurological damage evidenced by the posture and lack of movement of the baby's arms and hands.

Crushed doesn't even begin to describe how we felt. I think I cried harder than I ever have before, and longer too.  The rest of the day feel like a blur. Our genetic counselor arranged for us to immediately travel to another hospital to have a CVS (chorionic villus sampling) to sample the placenta, which shares genetic material with the baby and can be tested to determine genetic makeup. Before the CVS, we also had another ultrasound and a fetal echocardiogram to examine the baby's heart, which revealed that the left chamber of the heart was very enlarged and the right chamber was very small and weak. Our doctor who performed the CVS was kind enough to snap a few pictures of the baby's profile for us.

Four days after testing, we received the results of our CVS. Our baby had Trisomy 18, also known as Edwards syndrome. The defects we were seeing were a result of a third chromosome added to the 18th pair. Here's an image of the baby's chromosomes:

XY = baby boy

Trisomy 18 is rough, for many reasons. One of the hardest things for us to deal with was the many unknowns that come with it. Some babies don't make it very far through the pregnancy, and some babies make it all the way through pregnancy, only to not make it through the stress of the actual birth. Our OBGYN said we could carry to term, but our genetic counselor didn't think so, given the severity of the defects the baby showed. They both recommended that we continue with regular monthly prenatal visits, as nothing could be done to change or fix any of the baby's defects and we chose not to terminate the pregnancy.

We'll call this phase partially devastated - we knew there wasn't a chance for a good outcome for our baby, but we were still pregnant with a baby that was growing and alive. The happiness was gone, but the complete devastation hadn't set in, because we still had our baby; he was still alive. Our week 14 checkup went normally - baby had a regular-ish heartbeat and was developing small, but still growing. Our week 17 checkup was different - the doctor could not find a heartbeat with the doppler, so she brought in an ultrasound to find the baby. She was unable to find a heartbeat, which a second doctor confirmed, and measurements showed that the baby had most likely passed a week or so before. Even though I was expecting it, maybe even hoping for it (if I'm being honest), it still broke my heart. I think a small part of me was still hoping for a miracle, and the rest of me was still just devastated that our baby boy was gone. This is when the total devastation phase that sets in anytime you lose someone you love.

We checked into the hospital on March 23 (two days later) to be induced to deliver our sweet baby boy, and almost 12 hours later, Ryan Edward McClain arrived - March 24, 2016 at 6:47 am weighing only 0.7 oz and measuring 5 1/2 inches. The nurse was kind enough to wrap him in a tiny blanket, and we were able to have him with us for a few hours. Then we let him go. Those who know about our situation already have been so kind to bring meals and send flowers, and we appreciate it all. Most people who do know say "I know there's nothing I can say....." and there's not. There's nothing that can fill the hole that Ryan left, and that's just going to have to be how it is for now. For now, we appreciate the hugs and the "I'm so sorry"s. The entire labor and delivery process brought us some closure and a little peace, and we are doing our best to fill the rest of the hole with love, for both of our sons.