Let’s rip off the bandaid. When it comes to private matters, it’s not so easy for me to share. I want to be vulnerable and share because it’s so humbling that most of you take the time to care about what’s going on in my life. I really appreciate the patience and support.
We’ve been really quiet about this scare, not just because something is/was very wrong but also because there have been many positives and there was so much we had to learn before letting this out in the open. Yet, there are still a lot of questions we don’t have the answers to. As I’m writing this with events still fresh in my mind, the first thing I want is for those who had a loss, who have been struggling, who are still going through a dark time, to know that they’re not alone. I know how helpful it is to hear similar stories within your community and how you can be supported. I hope to shine light on what to expect. I know everyone has different pregnancies and hardships they’re dealing with. I also know every pregnancy is a huge blessing.
I’ll never forget the night my husband came home early from coaching. “You’re home so quick!”, I said. The look on his face gave me a lump in my throat. Then I remembered I recently had blood drawn just a week ago for a genetic screening of the baby.
“We need to talk.”
We sat down on the corner of the couch. He had gotten the call from our nurse practitioner about my test results from week 16. They had come back positive, showing a high risk for birth defect. It meant my child had a possibility of spina bifida or anacephaly. I had never been more shocked, felt betrayed in so many ways, heartbroken, and so fearful for this life I’m creating.
During the next agonizing two weeks until our “high risk” sonogram appointment, we sobbed for many hours and had sleepless nights. While we still to stay positive that it could’ve just been a false positive or we had the due date wrong. If the baby is further along than thought it can throw the tests out of whack.
We clutched hands watching the sonogram. Memories of my anatomy class comes to mind. The skull looks like it’s a full skull, the spine looks really good, the baby had legs for days and a hand that waved hello to us.
September 4th was a day I’ll never forget.
We had the diagnosis we never expected to hear. Omphalocele. I had never heard of it. I couldn’t even pronounce it, let alone spell it properly at first. I listened to her diagnosis so carefully because I had remembered researching other possible birth defects and what their outcome was to be. Omphalocele was one I researched and I had the image of the defect planted in my head. It’s such a rare birth defect that happens 1 in 4,000 births. It was caused by errors in fetal development. The room caved in on me and got real dark. I sobbed hearing every possibility, the bad and the good. We had to weigh in on the bad first which means the baby had a higher probability of not surviving the first year if found to have certain chromosomal issues, along with other defects such as the heart. After many hard discussion and questions, I looked at my husband and asked the doctor to give us 5 minutes. We knew what I had to do for the sake of our family. As soon as she closed the door…I don’t think I’ve never seen my husband cry this hard, ever, in our entire 10 year relationship. My heart broke in a million pieces, not just for him but for our baby.
Right away, the room immediately flipped for an amniocentesis procedure and within five painful minutes which FELT LIKE HOURS, I had 4 large vials of goldish looking liquid carefully taken from the amniotic sac.
We were told to wait 72 hours for the preliminary results and 10-14 days for the rest of the chromosome results. We left feeling certainly uneasy. That very night, we contacted some of our close family members about the unexpected, the scary, the unknown, not having enough knowledge to leave their questions answered…
I took the whole day off from work for a 15 minute appointment that was at 8 am. Not knowing how I was going to be able to handle it mentally. As we went in that morning with tears in our eyes for our preliminary results, expecting the worst, not knowing what to do, we finally took a deep sigh of relief as the doctor read out the preliminary result. So far the test was showing negative, which is good. The worst was not over yet. We were still holding our breath for the rest of the chromosome tests to come back. With asked more questions. What did we do? What can we do? What can’t we do? The only restrictions I had was flying. That meant my poor dear mother couldn’t hold the baby shower of her dreams for her first grandchild and we couldn’t see our family for the holidays given the circumstances that could happen if I had gone into labor early.
September 17th, my birthday, I took an entire day off from work. Just as I was treating myself on a pedicure feeling great and super relaxed, I received a text from Justin to FaceTime him. Knowing what this was about, all the knots came back, tension was all time high again, I started to sweat but as soon as I saw his calm face. I had a feeling we were ok. The rest of the chromosome results came back. “It’s all clear, baby. Happy Birthday.” Tears of happiness streamed down my face as my toe nails were getting pretty and pink for date night. It was the best birthday present I’ve ever gotten.
There was just one more defect they wanted to rule out and that was the heart. Most babies with omphalocele also have pulmonary issues and heart defects. Our doctor didn’t suspect a lung issue but rather her heart because of the way the sac was pulling it down. Our baby needed an echo and better diagnosis by a cardiologist.
Our appointment was yet again not for another few weeks. We were told they only do two 4 hour appointments a day, not realizing if something was wrong with the heart, they may need to send us to another office, in another building for more tests.
Many beautiful heartbeats, sonogram pictures and videos were taken, after two hours, we learned that the heart is tilted horizontally with the right ventricle slightly enlarge than normal for the size. The cardiologist did not suspect anything serious. The heart beat, the blood flow was fine. Did I mention she won’t sit still for the doctors?
We were pleased to hear really good news and the only recommendation is an echo after birth.
Since then every sonogram and tests we’ve done to date has shown high hopes for the future outcome. We can continue to check off the nightmares. I don’t like to talk about the birth plan I have to have. This will be a scheduled cesarean delivery having the baby under the care of a team of 7 doctors. She will be in NICU 6-8 weeks minimum at a children’s hospital. She will indeed have multiple surgeries to repair the defect but should go on and live a healthy life given that everything goes well.
Looking back on this, it was such a difficult journey to navigate but everything seemed to happen for a reason. I will forever be an advocate for genetic/AFP screening. If your doctor is recommending it, it doesn’t hurt to get tested. Please know if you do get a positive result, it just may mean you need more tests. In fact, it made this pregnancy scary and that much more precious and wonderful at the same time.
Her due date falls on International Omphalocele Awareness Day. While we were in such a dark place for some time, I count my blessings in every way.
We are so excited to meet our little one in the new decade.
That Deaf RDH Foundation 