Tilly Malool Sweet Little Tilly Bean

The story of little Tilly began in December 2018 when Brad and I found out we were expecting. The first few months of our pregnancy were full of joy and excitement as we couldn't wait to raise our baby in our recently new home in Hawaii. We decided to get early genetic testing done at 11 weeks gestation which also would include the gender of our sweet baby. We both initially felt we were having a boy and to our surprise when we opened the envelope containing the results it said girl! We were both so excited and it made the whole pregnancy feel that much more real since it was still so early. The genetic testing also ruled out any major chromosomal abnormalities which was a great relief and made both of us feel more at ease in our new journey. The next few weeks passed and everything was seemingly normal, terrible morning sickness and fatigue in my first trimester and routine OB appointments every few weeks. The next big milestone in our journey was the anatomy scan at 18.5 weeks. Having not been pregnant before all I expected from the appointment was a more detailed ultrasound with better images of baby girl. The appointment started out as normal and was exciting to see baby moving all over. I started to get a bad gut feeling  after about 45 minutes of a very thourough scan in which the sonographer kept making the same pass over and over again clearly trying to get a better look at something without saying anything to us. She finished and told us the doctor would be in to go over the results with us shortly.  After what felt like an eternity he finally came in the room and did another quick scan to confirm the sonographers previous findings. When he was finished he initially discussed with us that Tilly had what was called a 'two vessel cord or single umbilical artery',  his explanation was that it was fairly common and the main concern would be that she could be on the smaller side as her umbilical cord only had one vein and one artery when it typically should have two veins and one artery delivering her all the essential nutrients from my placenta. He then shared I also had placenta previa at this point in my pregnancy which he also didn't feel was a concern and stated it would likely resolve itself as my uterus grew (it did thankfully). Already having received two bits of not so great news I didn't expect there to be anything else however he then explained that they also couldn't see Tilly's 'stomach bubble' as he referred to it. This was probably the most alarming bit of news that we had received however just as with the other two diagnosis's he quickly backed it by saying more than likely she just hadn't swallowed any amniotic fluid recently or that maybe she had a 'blockage' of some sort. His reassurance with each scenario did help a bit but we left feeling unsure and wished we would have asked a lot more questions.  I felt down and worried with all of the news we had recieved and had a followup ultrasound scheduled in 5 weeks to monitor the findings which seemed as though that date was a century away.  After the appointment I couldn't help but google more about the SUA having been in shock when the doctor explained everything. I quickly realized google is not your friend in medical diagnosis in pregnancy and felt even more worried after my new research. I turned to Facebook and quickly found a support group for babies with the same diagnosis and that seemed to ease my nerves a bit. At this point the absence of the stomach bubble wasn't our primary concern as the doctor made it seem as though it was very unlikely. I had a trip planned to go back to the mainland to visit with family coming up in a few weeks and decided that while I was there it would be beneficial to get a second opinion on the findings the doctor in Hawaii reported. For the next few weeks my pregnancy progressed as normal and we were trying our best to stay positive. After several days of phone tag between doctors in Hawaii and South Carolina I finally scheduled the appointment for a second opinion with maternal fetal medicine at MUSC. I left home in Hawaii for my trip on April 12th and was so excited to have the time off to spend with family! Brad had recently started a new position at work and was unable to travel with me this time however, he was able to take a few days off in order to make it to the appointment.  The day of the appointment came and I was so nervous for the news we would recieve but knew it would feel good to have a definitive answer on the previous findings. I had an ultrasound done and unfortunately soon into the scan that same gut feeling came creeping back when the sonographer began to do the same repetitive scans on one particular area on Tilly. My mom had came to this appointment with us and was excited to be able to be involved in our pregnancy since this was her first chance to do so. She also noticed the sonographer seeming to really be looking for something and decided to ask if she could see Tilly's stomach, in which she reluctantly responded no. This was the news we were dreading the most and unfortunately this ultrasound had confirmed our sweet baby girl was about to embark on a challenging medical journey. The doctor came in and explained the findings in much more detail than was described at our last appointment. This was the first time hearing the diagnosis of the absent stomach bubble which was called Esophageal Atresia or Trachesophageal Fistula. He explained there were different types of the defect however, unfortunately would not be able to be confirmed until birth. He also explained there  would be some sort of corrective surgery required  to make the connection of her esophagus to her stomach. So, in short Tilly's esophagus was likely not attached to her stomach,  making her unable to swallow any amniotic fluid which resulted in us  being unable to view her stomach on an ultrasound as it would typically be seen.