“We Have Seen Many Miracles . . . ” the Healing Journey for a Baby With Omphalocele
By Primary Children's Hospital
Aug 19, 2016
Updated Nov 17, 2023
5 min read
Written by Erin Bowers
On April 23, 2014 our world changed forever. We were at a routine pregnancy check-up to listen to our baby's heartbeat and find out if we were having a boy or a girl. Instead, we learned a new word that was scary and heart breaking. The word was Omphalocele. Omphalocele is an abdominal wall defect where organs from the abdomen form outside the body in the umbilical cord. Omphalocele is often associated with other birth defects including heart and lung defects and other associated syndromes.
We eventually found out that a little girl would be joining our family. We named her Ella. Her Omphalocele was considered giant because her liver was part of it. We were asked if we wanted to terminate the pregnancy because these babies often have many problems or don't survive at all. We were also told that she had a VSD and ASD (heart defects), that her bladder was draining into her abdomen, and that she was very small for her age. Doctors gave her a 10-20% chance of living. Ella was monitored closely during the whole pregnancy by Maternal Fetal Medicine and Cardiology.
After what seemed like a very long pregnancy, Ella was born on September 19th via cesarean section! She was immediately taken to the Neonatal ICU at Primary Children's Hospital. She was breathing on her own for a few days and then she needed oxygen assistance for a few weeks. Her Omphalocele was very large and her body was very tiny. We were so happy to finally meet our little girl, even given this serious condition.
While in the NICU, we met with our Pediatric Surgeon, Dr. Stephen Fenton with Primary Children's Hospital Fetal Center. He suggested that Paint and Wait was going to be the best option for Ella. Paint and Wait is a longer process and surgery isn't done to repair the Omphalocele until the child is older. Silvadine cream is "painted" on the O and then it is wrapped with gauze and coban. As time goes by, skin begins to form on the O. Then if the child is doing well, compression of the bandages can be done gradually each day. This forces the contents of the Ompalocele back into the abdomen. If this is accomplished successfully, then surgery can be done to close the muscle tissue and remove the extra skin. In some cases this can take years.
We, of course, wanted Ella to be repaired right away. However, after seeing how small and fragile she was and after discussing the options with Dr. Fenton, we knew it was going to be the best thing for Ella to wait. It was scary to think that we would be bringing our baby home with her organs on the outside of her body! We were shown how to change the dressings on her Omphalocele and how to keep her Omphalocele safe and protected. When she was born the VSD and ASD had closed on their own and she had no issues with her bladder. Other than the Omphalocele she was a very healthy baby.
Ella stayed in the NICU for 7 weeks. She came home on a little oxygen which she used for a few months. She was breast feeding and doing really well. Shield Orthotics made her a protective shell to cover her O. She also needed a special car seat made for children born with Omphalocele.
Ella thrived at home! She went to physical therapy to help her with crawling and to help strengthen her neck muscles. When Ella turned one year we started compressing her O. In Ella's case the opening to her abdomen was very narrow. We had to wrap her O very tall and narrow and then start to compress from the top. We noticed that her lower abdomen started to bulge a little when the liver was making its way inside.
Wrapping her with gauze and coban in a figure 8 around the O really helped to gently open the base and slowly allow the liver to move inside. She tolerated it really well and within 2 months her liver returned to her abdomen. She still had some intestine in her O, but could be wrapped almost entirely flat. Once her liver went into her abdomen her stomach got a little squished and she wasn't able to eat enough to help her grow. She was given a feeding tube (NG) which she had for 4 months.
Ella was followed closely by Dr. Fenton from birth until her surgery. When she was 19 months old he did her closer surgery. They were able to remove the extra skin and Dr. Siddiqi, a Plastic Surgeon at Primary Children's Hospital, made her a little belly button. She did really well after surgery. She was up and moving around the next day. A G-tube was also placed during surgery, because she does need some help with eating enough calories.
Dr. Fenton was the first doctor we met who had a positive outlook for Ella. We believe that his decision to use the Paint and Wait method was the best thing for Ella! Dr. Fenton was very supportive and was always willing to answer our questions and concerns. The doctors and nurses with the Fetal Center at Primary Children's Hospital were so kind to Ella. She received the best care!
Ella is a happy, healthy and active little girl. She runs around with her brother and sister and does all the things a little girl her age should be able to do! She has been through a lot, but has done well with every challenge she has faced. We have seen many miracles in her life and can't wait to see what the future holds for her!
Every child with Omphalocele has a different story. We are so thankful that Ella's story will continue. Omphalocele occurs 1 in 5,000 births and Giant Omphalocele is 1 in 10,000 birth.