As first time parents, my husband and I were beyond excited to see our baby at the 12 week ultrasound, but never expected to hear the word "omphalocele" at the end of the appointment. It was explained to us that our baby was diagnosed as having a rare abdominal wall defect where some of the organs would remain outside in a sac through the umbilicus for the remainder of the pregnancy. Additionally, there was a strong possibility of serious and deadly genetic issues that usually accompany the omphalocele diagnosis. To say we were scared, confused and angry at the diagnosis would be an understatement.
Starting at week 20 of my pregnancy, we began to meet with various departments at CHEO on a regular basis. From genetics to NICU, to cardiology and surgical - it was a lot to absorb, but extremely comforting to know that so many teams were already working together to ensure our baby would be taken care of when she finally arrived. Once we received the genetic 'all clear', our focus as parents was surgical.
We were frightened to learn that the majority of our baby girl's liver, gallbladder, and possibly bowel, were growing outside her body, and worried how that would affect other organ growth. During our surgical appointment, a huge calm fell over us largely in thanks to Dr. Anwar Martinez and Dr. Kyle Cowan. Dr. Anwar explained to us in detail what we should expect as parents and what our baby would undergo. He and Dr. Kyle saw how scared we were, but they assured us with kindness and confidence that they had performed surgeries for omphalocele repair and that they would do everything to help our baby.
On February 29th, our Emily arrived via a planned c-section and was transported to CHEO shortly after. Dr. Anwar and the teams were prepped well in advance that day, ready to perform the necessary head-to-toe tests and ultrasounds in order to solidify their surgical plan. During this time, Emily was diagnosed as having a large VSD (ventricular septal defect) in the lower portion of her heart. Though the VSD would not impede her immediate surgery to repair the omphalocele, there was concern for her long term health. Less than 48 hours after Emily was born, Dr. Anwar and Dr. Kyle did what we thought was impossible: Emily received primary closure of her omphalocele; everything that was out, was now back in!
Emily was at CHEO for the first 24 days of her life and during that time, Dr. Anwar checked in on Emily every single day, with the exception of the days he was off to take his exams (which he, not surprisingly, passed!). We made such a connection with every single CHEO staff member, that we are forever grateful. Emily is now 7 months old and is doing fantastic! She has had no issues following her surgery and her VSD has decreased in size significantly.
To all our nurses, doctors, ultrasound technicians, social workers, transport team, anesthesiologists, fellows, interns, students, volunteers, administration staff – everyone, both in NICU and the pediatric ward - words will never express the complete gratitude and appreciation that we have for each one of you! And to Dr. Anwar and Dr. Kyle – we are so thankful for all that you did and think of you each time we see Emily's beautiful and unique belly button!
- Angela McDonnell