What is gastroschisis?
Gastroschisis is an abdominal defect. The baby is born with the intestines (bowel) outside the body through an opening near the belly button. This defect happens very early in pregnancy. It can range from a small to a large defect. It sometimes contains other organs like the stomach or liver.
Who gets gastroschisis?
Gastroschisis occurs in about 1 in 5,000 live births. It happens more often in young mothers. No specific cause or risk factors have been found. Having one child with gastroschisis does not increase the chance of having another child with gastroschisis.
What are the signs and symptoms of gastroschisis?
Gastroschisis can usually be seen before the baby is born by ultrasound. The intestines will be seen outside the abdominal cavity. The intestines are exposed to amniotic fluid during the pregnancy. They can become damaged, irritated, or swollen. This can prevent them from working normally once they are placed back inside the abdomen. The intestines can also shorten, twist, or swell, leading to intestinal blockage, which can cause feeding problems. We will closely monitor for any issues and care for your baby should any of these problems occur.
What can I expect BEFORE delivery of my baby?
You and your baby will be watched closely throughout your pregnancy. Pregnancies with gastroschisis are at higher risk for:
- Poor fetal growth
- Decreased amniotic fluid volume
- Preterm delivery
- Stillbirth
You can expect to be watched closely with diagnostic tests and ultrasounds. Most women are able to deliver babies with gastroschisis vaginally. If there is a medical concern or if your baby is having difficulty before birth a cesarean delivery may be needed.
What can I expect AFTER delivery of my baby?
At delivery your baby will be closely examined to make sure they are breathing well. The intestines will be carefully checked and handled to prevent further damage. Your baby will not be able to eat until the intestines are placed back in the abdomen and begin to heal and work. During this time there will be a tube in your baby’s mouth (OGT) or nose (NGT) to remove gastric juices. An IV (Intravenous Catheter) will be placed to provide nutrition while the baby cannot eat. An IV fluid called Total Parenteral Nutrition (TPN) will be given to provide protein, fat, sugar, vitamins and minerals to support healing and growth.
What is the treatment for gastroschisis?
Gastroschisis is fixed by a surgery to put the intestines and other abdominal organs back into the abdominal cavity and close the abdominal wall.
What can I expect from surgery?
Sometimes gastroschisis can fixed completely right away. This is called a primary gastroschisis repair. More commonly, the repair is done in steps called a staged repair. Sometimes the intestines need to be placed in a plastic pouch, called a “silo,” to allow the intestines to be slowly pushed back down into your child’s abdomen over a few days. The abdomen is then closed in a surgery in the operating room. After birth, a surgeon will decide the best method for your baby depending on the size and condition of the exposed intestine.
When can my baby eat?
Your baby will not be able to eat for a while after surgery. We strongly encourage the use of breast milk because it has many benefits to infants with special medical needs. Breast milk supports growth and helps to heal the intestine. We will use your colostrum (the first breast milk you make) to drop in your baby’s cheek to strengthen their immune system and as a sweet taste while we wait to start feeding. Once your baby stools after surgery and the NG tube or OG tube has been removed, we will be able to feed your baby small amounts of milk. Feeding can be a hard part of recovery because the intestines were swollen and inflamed at birth. As your baby begins to feed better we will slowly increase the amount of milk or formula. When your baby is eating enough to gain weight, the IV will be removed.
It is important for you to pump breast milk immediately after delivery and continue to pump at least 8 times per day using a hospital grade pump. If you do not pump regularly or effectively, your body will slow down or stop making milk all together. It is important for you to try to get to a full milk supply (more than 24 ounces per day) by day 14. Our nurses and lactation consultants can help you get started pumping and answer any questions you may have. The NICU has breast pumps available to you. We will store your breast milk while your baby is not eating.
How can I help my baby learn to eat by mouth?
Babies with gastroschisis will take time to learn to eat. There are many ways to help your baby learn to eat by mouth. Providing positive experiences to their body and to their mouth can help the baby get his/her body ready to accept feeds. With the help of the medical team, your baby will work towards eating by mouth. Our team of feeding therapists will help your baby with improving these skills.
Here are some suggestions:
- Massage is a great way for baby to develop a sense of loving touch and bond with parents.
- Provide loving hand hugs and containment.
- Enjoy skin to skin experiences. Your baby will begin to smell and lick mommy’s skin and prepare for future breastfeeding experiences.
- Non‐nutritive breast feeding can help your baby practice feeding on the breast.
- Kissing your baby’s face.
- Practice sucking on pacifier.
How soon can I put my baby on their belly?
Tummy time is important for your baby’s motor and sensory development and reaching their milestones. Tummy time helps improve neck and head control, back, shoulder and abdominal muscles. This will help with baby’s feedings. As soon as your baby’s surgical incision is healed, ask your pediatric surgeon if you can start tummy time. Often, babies will cry during tummy time. They are being put in a position that is harder and requires more work. They may also have pain or sensitivity from the surgical site. It is important to help support them without causing too much pain or discomfort and to recognize when their cries might be a sign that something is wrong that needs to be addressed by a doctor.
Tips for successful “Tummy Time”:
- It may be helpful to prop baby up on a bolster to relieve pressure directly against the baby’s tummy.
- Be consistent. Start off for short periods of time and then gradually increase time as tolerated.
- If you are concerned about your baby’s development, talk to your baby’s care team. We will help the baby with improving these skills.
What are the long‐term consequences?
Long‐term outcomes for babies with gastroschisis can be very good but length of stay in the hospital depends on many things. Prematurity and complications like gastroesophageal reflux disease, feeding difficulties, and intestinal blockages can extend the length of stay. After discharge from the hospital, your baby will be closely monitored by their pediatrician and will return to CHOC Children’s for appointments with your pediatric surgeon.
