1. Understand an Omphalocele Diagnosis
As a parent, dealing with the news of an omphalocele diagnosis can be very difficult, whether you get it while pregnant or just after the birth of your baby. If you are still pregnant, at least you will have some time to come to terms with the diagnosis before the birth and do some research into the condition. An omphalocele is a serious birth defect, and you should expect your baby to have to stay in the neonatal intensive care unit (NICU) for some time while the defect is repaired. In some cases, omphaloceles are also indicative of other birth defects, such as cardiac malformations. In these cases, additional medical interventions may be needed. Educating yourself about the condition is the best thing you can do for your child. You may have a long road ahead of you.
2. Form a Relationship With Your Medical Team
Finding a good team of medical professionals and building relationships with the team members are important parts of managing your child's omphalocele. Before the birth, you will need to be monitored by a perinatologist, an obstetrician with specialized training in high-risk pregnancies and births. After the birth, you will probably have several doctors, including a neonatologist, a pediatric surgeon, a pediatric gastroenterologist and a pediatric plastic surgeon. A pediatric cardiologist may also be needed if your child has a cardiac defect. The neonatal nursing team will be an integral part of your life for as long as your child is in the NICU (and sometimes afterwards). The nurses are responsible for taking care of your child and teaching you how to take care of your child's needs.
3. Learn to Manage at Home
Depending on the severity of your child's omphalocele, it may take months to return the organs to the abdominal cavity. This is often done in a staged-reduction approach over several surgeries. During that time, your child may stay in the NICU. If you can demonstrate that you can manage your child's daily medical needs at home, however, you may be permitted to take your child home during the staged reduction. This will require dressing the omphalocele, managing feeding (usually through a gastrostomy tube) and other duties. Most parents prefer having their child at home as opposed to constantly visiting the NICU, but doctors want to make sure your child will be safe outside of the hospital setting.
4. Monitor Complications After Closure
When your child's omphalocele is finally closed, you may think the long nightmare is over. There can be serious complications, however, even after closure. Feeding intolerance is a serious problem for many children and must be monitored carefully. If your child has a distended or tender abdomen, isn't feeding properly or shows failure to thrive, that is a warning sign that there may be additional complications from the omphalocele. In some cases, children need feeding tubes for several years before oral feedings are possible. Frequent followups with your child's pediatrician and other specialists will be necessary.
