First things first: an introduction. My name is Rebecca and I am married to Josh, we just recently celebrated our 2 year anniversary February 26th, although we’ve been together almost a decade. We have called Durham our home for 2 years together, but our hometown is Greenville, NC (Go Pirates!). I moved to the Durham area when I got a job at Duke Fetal Diagnostic Center as an ultrasound tech right out of school in 2009. Josh moved up here after we got married and he finished school at ECU in 2011. We have been members of The Summit Church in Durham for almost a year and I have been going for three years now. We are heavily involved in our church and have a very strong faith. Josh and I have always wanted a big family and we both have a heart for adoption. Our plan was to have two of our own and adopt two. We have been thinking about planning a family since we got married, but some obstacles were in our way. First, Josh needed to find a job and then once he did, we went on a mission trip to Haiti and wanted to wait until we came back to start trying. Once we started trying to get pregnant, I got pregnant almost immediately. I work at a high risk center and I know way too many terrible pregnancy outcomes. I think I may have been placed in this job so God would preparing my heart for what was about to happen…
This is my first blog post ever, unfortunately, so please bear with me. This also may be the longest blog post as I am trying to describe a complicated situation to people who may not know anything about it. I feel this is the most efficient way to share information about our current situation without having to repeat myself over. Today I am 13 weeks pregnant. I am due September 12, 2013. What should be the happiest and most peaceful time in our lives is shrouded by uncertainty and tough decisions. What makes my pregnancy high risk are the multiple birth defects I personally found, scanning myself, at 10 weeks gestation. If I get too technical in my posts, please make a comment below to ask any questions and I will clarify. I will try to explain without using all of our OB jargon. As a sonographer, I scanned myself on occasion to look at the heartbeat. February 18th when I got to work, I did just that and saw what I know to be abnormal findings and immediately called my team leader to come in to scan me. What we discovered are these exact findings: increased fluid behind the neck, extending throughout the body called a cystic hygroma, the liver and intestines outside of the body through a defect called an omphalocele and the heart not inside the chest where it is supposed to be, but pulled into the abdomen. None of these findings give an accurate diagnosis. The diagnosis most likely is not a chromosomal issue, such as Down’s syndrome, but that cannot be ruled out presently. In my four years at Duke, I have never seen anything like what my baby has. A few of my coworkers at Duke that have been there longer than 10 years have rarely seen anything similar. What this baby has is extremely rare and spontaneous, meaning something went wrong while the baby was developing all these organs. If/when I get pregnant again, I have the same chance to have a baby with these findings as I did this time: slim to none.
I had another ultrasound today because the baby is a little bigger and we thought we could possibly get closer to a name for what this baby has. I am a visual person and understand some people might need to see pictures to understand what I’m saying. I will post some ultrasound pictures with explanations to help. The liver, intestines and stomach are still outside of the baby in the amniotic fluid. The heart is too small to see if there are internal defects, but it remains in the abdomen and a part of it might even be outside the baby’s body. The arms and legs themselves appear normal at the moment, as well as baby’s face (although it is still early to see everything). The biggest change from the last ultrasound is the baby’s spine. The baby’s spine is curved into a C from the pelvis to the legs. The heartbeat is normal, but we will not see the heart structure until at least 18 weeks to see if there are defects.
What does this mean? Well, it means we don’t have any concrete answers to anything right now. This is, in a word frustrating. At ANY point in my pregnancy, I could have a miscarriage. I could have a stillbirth. I could birth a live baby, only to survive a few hours or days. I could have a baby that survives everything but the multiple surgeries this baby will have. I live every day with a question mark in this pregnancy. I, the doctors and science do not have any sort of answer. Some people have asked if my clinic or the doctors made a mistake. My answer to that is a resounding no. We all are trained in this specifically and I could not be at a better practice. In fact, if I was at a different practice anywhere in NC, I would be referred here. Some people have questioned how early I am and maybe things will get better once the baby is older. My answer is no, everything that is outside of the baby right now is not supposed to be outside. The spine is not supposed to be this curved. The heart should never be anywhere but the chest. I am not too early to see that this baby has a lot of obstacles to overcome in its fragile life. This is obviously DEVASTATING news but Josh and I have faith in the goodness of God and we know His reasons are beyond anyone’s understanding. Don’t mistake our strength in faith to be strength in life, however. We still need daily prayers for strength and to get through everyday. I don’t know if it’s harder on Josh or me. Josh works in a place where very few people know the situation. I work at a place where every single doctor, nurse, sonographer, receptionist and genetic counselor knows something is going on. I work with pregnant women everyday and will soon start showing and fielding questions. But, I work at a very open and supportive environment. This is hard on us both.
The only thing we need right now are prayers. And lots of them. We need a miracle and that’s the only way the news will get better in the future. Even though my faith is strong, this is a hard thing for me to grasp, coming from a medical background. Science says there is no way the liver, intestines and stomach will resend back into the baby’s body. The heart will never move from the belly. The spine will not straighten itself out. God says different. My God is a God of miracles and I personally need all the help I can get in believing it. Please pray with Josh and I and this unborn life. Pray that we have any sort of peace in sorting this out because right now all we have is time. And we wait…and wait…and wait. I’m not going to sugarcoat what I feel throughout this blog and this pregnancy. I will share my struggles and my faith.
When the doctor talked to Josh and I today (this doctor is one of the best Maternal Fetal Medicine doctors in practice), she said the best case scenerio given a medical background is that even if the baby survives the MULTIPLE surgeries to get everything back into the body, fix the heart, straighten the spine, this baby might not ever walk or have a “normal” physical life. We are not sure of brain function this early, because the brain hasn’t even started much of its developing at 13 weeks. She told us that if we are being realistic, we probably shouldn’t set up a nursery because even if this baby survives, he/she will spend many many months at Duke hospital. I want to honor this baby the best way I can. This blog is one of the ways I thought of. If I get to the late second/early third trimester, I’d like to have a baby shower. I want to enjoy every day I have with this baby while I can. This baby’s heart is beating…this baby is a LIFE and I am honored to be its mother and Josh its father.
What I am asking anyone who reads this is to pray on our behalf BOLDLY to God, asking him for a miracle that only He can give.
Let us therefore come boldly to the throne of grace that we may find mercy and grace in time of need. Hebrews 4:16
Here are a few ultrasound pictures from today’s scan. I will caption below. Just a cute picture of baby’s hand. One of my favorites. There was not a great picture of the omphalocele (liver/intestine pocket). There is a bulge at the bottom portion of the baby’s body. That circular structure is the liver/intestines that should not be in the fluid. This is the curved spine. It takes a 90 degree angle off to one side. One of the cute pictures of baby’s face. Look at that sweet nose/nasal bone.
This may help some people, this may confuse others. Like I said, we may know a name for a diagnosis in the coming weeks, for now I don’t want to speculate. Take this at face value: none of this is good news. Thankfully God is very good.
In His grace,
Rebecca and Josh