A guest BWS blog post by Jillian Smith
Our BWS story started in March of 2018. It was my second ultrasound with the twins. The shock of being pregnant with twins just two months after having our first son had finally wore off and we were so excited to find out the genders. My hometown doctors told me I was too high risk and sent me to All Children’s Hospital in St. Pete Florida for all my prenatal care and appointments. Our ultrasound was going well until I noticed the technician stopped smiling and talking to us. Something was different about “baby a”.
Before I knew it there were three other doctors in the room telling me that “baby A” has an omphalocele and was bigger than “baby B”. My heart was broken. The doctor gave me many options including stopping one or both pregnancies. I decided that was not the right path for me and continued with my twin pregnancy. The doctors said there was a higher risk in twin pregnancies for many different syndromes, so we had almost every “syndrome test” done and all of them came back negative. We were thrilled and relieved.
What’s different about “baby a”?
Since I was such high risk I had to travel every other week for ultrasounds. At this ultrasound I was by myself and I remember having the weirdest feeling even though I was so used to them. My doctor explained to me that over the 4 ultrasounds they noticed “baby a” was very big, she had a VERY thick umbilical cord, and she had an excessive amount of amniotic fluid around her compared to “baby b”. She also never seemed to put her tongue in her mouth and failed all her swallow tests.
All these symptoms combined with her omphalocele, they suspected she had BWS. Although they could not confirm with testing until the twins were born, I knew she had this disease. So, for months I prepared myself for the worst. I did not have a baby shower; I didn’t pick out names and didn’t buy any clothes for them.
Because of her omphalocele I had a scheduled c section, however the twins decided not to wait that long. At 36 weeks pregnant the day before my son turned one years old the twins were delivered by emergency c section.
A love like no other
“Baby a” was out first, her omphalocele was intact and they placed her into what looked like a zip lock bag, and then wrapped her in a blanket and handed her to me for just a few seconds while they worked on getting “baby b” out. I was so in love and in shock that she was here and with her eyes wide open staring right at me breathing on her own!
Before I got more than 10 seconds with her, they brought her straight up to the NICU. “Baby b” was perfectly fine and healthy and able to recover with me in our suite. I only remember seeing “baby a” in the NICU once before her team of doctors told me they were going to start her omphalocele repair. At just 24 hours old she had a remarkably successful surgery. And then after just 2 weeks in the NICU, my sweet Sapphire Rose got to come home and finally be with her brother and sister.
Thankful, grateful, & extremely blessed
Our journey and story are far from over, we are so lucky to have had all clean cancer scans the past two years for Sapphire. We are so lucky that her surgery was so successful that they even made her a little belly button and no scar at all! Although her tongue is enlarged, she has not yet needed reduction surgery because she can eat and breath and speak simply fine. Her right limbs are just a tiny bit bigger than her left limbs, but this has not affected her walking or balance too much.
If I could give advice to another parent who just got their child’s diagnosis it would be that it gets easier and that your child is stronger and more resilient than you may think. They will surprise you and inspire you every single day.
“Live Large & Stay RARE.