Julia has been to my office twice now, and she still doesn’t really understand what is wrong with her baby. She was first referred to me because a routine screening ultrasound in her OB’s office discovered a possible birth defect in her baby. Unfortunately, this turned out to be true – her baby has an abnormality called omphalocele, which is a defect in the abdominal wall in the area where the umbilical cord inserts into the baby.
- With an omphalocele, the intestines protrude into the area of the umbilical cord, and are covered with the same thin membrane that covers the cord.
- The defect may be small or large. I explained to Julia that small defects contain some of the fetal intestine. Larger defects may contain large portions of the bowel, and even the baby’s liver.
- Omphalocele is also associated with an increased risk of chromosome abnormalities like Down syndrome, so we offer amniocentesis to determine if there is an underlying chromosomal abnormality.
- Next, babies with omphalocele should ideally be delivered in a hospital with a neonatal intensive care unit, because surgery is needed shortly after delivery.
- We try to have our moms and their families meet with the pediatric surgeon and the neonatologists (newborn specialists) during the pregnancy. The surgeons describe the surgery to repair the defect, and the neonatologist gives the parents an idea of what to expect during the baby’s hospitalization.
- With larger omphaloceles, cesarean delivery is sometimes necessary to protect the baby’s liver from being injured.
Omphalocele? Chromosomal abnormalities? Neonatologists? Cesarean delivery? Surgery on my BABY? You can start to see why Julia was so stunned, and why she won’t remember much of our first visit. This post is not really about omphalocele; it’s about the overwhelm. There is only so much information someone can process in a single visit, especially when the conversation starts with “Your baby has an abnormality.” Here are some points to remember when you are told that your baby may have a problem:
- Stop me. I have seen hundreds of babies with birth defects, but you haven’t. This is brand new to you. Ask me to repeat information as often as you need, so that you can begin to understand what is happening. I can try to describe the abnormality in a different way. I can draw pictures or point to areas of the ultrasound images. I can even just stop talking so that you can breathe for a few minutes.
- Make another appointment. Sometimes your brain simply can’t absorb any more information, especially when you’re faced with something completely outside your experience. I get it. This is big stuff, and it can be overwhelming. Make another appointment to come back and talk again. Bring anyone you want with you, especially people that will ask good questions and be supportive.
- Ask for homework. There are good websites and articles concerning most birth defects. We can provide written information and links to reputable sites, so that you can read about this at home, when you have plenty of time. There are also support organizations for many fetal problems and birth defects, and we can put you in touch with them. We can even connect you with other parents who have had a similarly affected child. It can be enormously comforting to talk to a mom who has experienced what you are going through.
Julia is starting to move forward now, little by little. She met with the neonatologist last week, who talked with her about what to expect after the baby is born. She will be visiting the pediatric surgeon next to discuss her baby’s surgery. I will be seeing her every month of the pregnancy to watch her baby’s growth and well-being. Sometimes pregnancy isn’t smooth and fun. Sometimes it’s hard and unfair. Julia is having to deal with more than a typical pregnant woman should. But through this tough situation, she is finding that she is smarter and stronger than she knew. So are you. She will learn about this problem and make the right decisions for her baby. So will you. It’s okay to feel scared, angry, even guilty. Go home and get some rest. Cry, complain, and sleep some. When you’re ready to talk again, we’ll be here.
Are you having, or have you had, a baby with a birth defect? What was that like for you? What helped? Share your experience in the comments below.