When One Ultrasound Changes Your Life

“Your baby has a cleft lip.”

The doctor tapped his index finger on his lip and looked down at his feet when he said the words to me. I was sitting with my legs dangling over the side of the table, still holding the crumpled paper towel I had used to wipe the ultrasound goo off my belly. 

“Plastic surgery is really good these days. Often you can’t even tell that anything was wrong. But you should set up an appointment with the surgeons here and meet with them yourself. And we’ll want to do an Amnio to screen for other abnormalities. Are you free to do that this afternoon?” 

He continued to speak, probably because I continued to stay silent. Plastic surgery. Abnormalities. Amniocentesis. These were not words I expected to hear when I came in for my 20 week ultrasound and I couldn’t process them nearly as quickly as they were being said to me.

I held up my hand, signaling him to stop. And when I finally spoke it was just to warn him. 

“I’m going to cry.” I said

“Well, that’s why we keep tissues right here,” he said. His hard demeanor instantly softened as he handed me a box of tissues. 

And cry, I did.

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That day was 11 years, 6 surgeries, and more-hospital-visits-than-I-can-count ago. But I still remember every moment like it was yesterday. Up until then, this pregnancy (my first) had been very normal, and I was focused on very normal things like nursery decor, picking out a stroller, and marveling at the wonder that is jeans with an elastic waist panel. I followed along with the weekly BabyCenter emails telling me what size fruit my baby was and what milestones we were hitting.

Then one day it was not normal. And I felt thrust into the dark with so many questions and fears and very little sense of how to navigate my way out of it.

For most people - the lucky ones - those 40 weeks of pregnancy are relatively uneventful. But many of us do find ourselves in tears at the doctor’s office, clutching our little ultrasound pictures to our hearts. So what do you do when something goes wrong? 

Everyone’s situation is different but here’s what helped me.

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Making a plan.

The scariest part of my pregnancy were those first weeks after that ultrasound when I had bad news, few facts, and a really active imagination. The uncertainty was incredibly stressful. Our first focus was on getting a clear diagnosis. We did a lot more imaging and tests, but at some point we understood that more testing did not always mean more certainty, and certainty is what we were after. So we stopped the testing. 

We had a clear diagnosis of a “unilateral complete cleft lip and palate”, and while we wouldn’t know if anything else was wrong with the baby until the birth, knowing that much for certain allowed us to move on to finding a treatment center. We researched and interviewed multiple doctors. Lucky for us, one of the leading cleft surgeons in the world is at our Children’s Hospital in Boston, which ultimately made our decision easy. From there, we met with the nurses who helped us understand the schedule of surgeries in the first year, what would happen when I delivered, and how to use the special feeding bottles. 

It was probably 2-3 months before we were able to get our plan in place. But once I knew who our medical team was, who to call when the baby was born, and what those first few months would look like, I was able to shift myself back to the “normals” of pregnancy for much of my last trimester.

Taking it one step, one day, one year at a time. 

Having your baby diagnosed with any sort of abnormality is stressful. When it’s an abnormality that will require years of treatment, it’s overwhelming.

For me, it was almost too much to process, and so I just focused on the year ahead of me. In our case, our baby would need four surgeries before his first birthday. And we knew he would need more surgeries in the years that followed, in addition to speech therapy, ear tubes, orthodontics, and who knows what else. 

But to make it more manageable for me to process in that moment, I just told myself...it’s a year. We just have to get through a year. We can do anything for a year.

Of course, it wasn’t just a year (though in our situation, it certainly was the most intense year). Since that first year we’ve had more surgeries and other obstacles to overcome. And as my son has grown into a pre-teen boy with his own personality and awareness of his condition, we’ve had both blessings and challenges that I couldn’t have imagined when he was still a baby. 

Even now - as he starts puberty and his face changes - he may need another major surgery to help his facial development. There’s nothing for us to do about that right now but worry, so I try to keep it out of my mind (and his). For me, focusing on just what is right in front of us (braces, speech therapy, girls??) has allowed me to manage my stress.

Surgeries throughout the years

Surgeries throughout the years

Surgeries throughout the years

Building my safety net.

I am lucky to have an amazing family that shows up for one other. Both of my sisters left their own kids at home and came to visit me from out of state in those first few weeks after we found out about the cleft. My in-laws rented an apartment near ours and came to help us for the first 6 weeks of our son’s life. They all took turns coming to help when my son had his surgeries. I do not know how we would have gotten through this without them.

Beyond that though, I needed help from other moms. Other people who knew what we were going through, and could help answer questions and quell fears. And I found those super women in the unlikeliest of places - the internet. Micro-communities pop up online for all sorts of conditions, and finding people who are going through exactly what you and your child are going through can be a huge help. I found refuge in message boards and cleft community forums. As recently as last year, I was seeking out help from them on how to get my son through a post-surgery 6-week all liquid diet. I still see pictures of these moms’ little cleft babies and not-so-baby anymore kids on my Facebook and Instagram feeds. It fills me with joy. 

We’ve been on this journey together from day one and no one understands it quite like we do.

Learning that it’s ok to feel sad.

One of the things that I have become acutely aware of since this experience is how much people are uncomfortable with other people’s sadness. We have such a strong tendency to tell people to look on the bright side of things, that we struggle to acknowledge people’s sadness and let them sit with it. 

So often when I would tell someone what was going on, I would hear “Well, at least it can be fixed,” or “It could be so much worse.” And while both of those things were absolutely true - and believe me, I was super grateful for it - I really wanted the people around me to just let me feel sad sometimes. Because I was. 

I was sad for my baby who was going to have to endure so many procedures. I was sad for that baby to grow up and get teased in school for how he looked. I was sad for me and my husband for all the uncertainty we have to navigate and the loss of normalcy in our lives as first time parents. 

Feeling sad and feeling grateful that things aren’t so much worse are not mutually exclusive emotions. Giving myself the permission and the space to feel sad allowed me to deal with that feeling and push through it.

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We all go on our own journey to parenthood. Sometimes it’s easy, and sometimes it takes a left turn to a place you didn’t even know about. It can be terrifying and unpredictable, but it’s up to you to learn this new road and navigate it as best you can. Because the sign in back says “Baby on Board” and that little person is counting on you to find your way.

Me and Elan over the years

Me and Elan over the years

Me and Elan over the years

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